Hunter’s Story

Everyone thinks that their baby is beautiful and perfect from the first time they gaze into their eyes, and we were no exception. Hunter was born on September 7, 2012, via emergency c-section. High blood pressure on my behalf, coupled with him experiencing stress during contractions, led the doctor to make that decision. Though the cord was wrapped around his neck prior to delivery, our handsome little man was alert and wide-eyed as his daddy introduced him to the world weighing in at 5 lbs. 11 oz. He was 5 lbs. 4 oz. when we brought him home and throughout most of his first year, he struggled to gain weight. Hunter had reflux and colic beginning a few weeks after we brought him home from the hospital. The colic passed at about 4 ½ months and we hoped that it would be smooth sailing after that.

Hunter quickly developed his own unique personality and people continue to be enamored with his charismatic smile and contagious laugh. He met all of his developmental milestones at appropriate times, but despised being on his tummy until he was able to crawl. He always tilted his head to the right, which looked cute in pictures, but unbeknownst to us, was a warning sign.

As a sports enthusiast and former coach, my husband and I often find ourselves blissfully engrossed in the lore and competitive nature of an athletic flick. There is generally a challenge that unfolds within the film, a few details that pull at your heartstrings, and a triumphantly motivational ending. Regardless of our love of sports, that type of storyline embodies how I’ve always felt our life story should unfold.

The premise of “Trouble with the Curve”, just as is the baseball movie, is to be able to deal with whatever life throws at you. As momma to our beautifully curious little boy, Hunter, we are always experiencing adventure in our little part of the world. What my husband and I didn’t know, is that we would literally experience our “Trouble with the Curve” so soon, as Hunter was recently diagnosed with progressive infantile scoliosis and a tethered spinal cord at the age of 13 months.

 

At about 9 months of age, I started noticing that one side of Hunter’s back looked like the musculature was built up or stronger on the right side than the left. I asked my sister, who is our resident pediatric occupational therapist, and she gave me a few things to implement and suggested that we continue to watch him and then refer to our pediatrician. At his one year appointment, our pediatrician didn’t say that anything was out of the ordinary, so I pointed the curvature out to him. He immediately asked me to take Hunter upstairs to get an x-ray. He called me later that afternoon and said that he hadn’t seen a child this young with scoliosis and referred me to an orthopedic. Then began the whirlwind. We met with an orthopedic soon thereafter, and were immediately told, without a complete examination mind you, that Hunter would never be able to play sports or do anything active. We were overwhelmed, upset, confused, frustrated, and angry to say the least. First of all, don’t decide our child’s fate without a thorough examination or even knowing his fighting personality. Never mind the fact that if you look up the word “active” in the dictionary, that I’m pretty sure his picture is next to the definition. The ortho ordered an MRI and said he wanted to sit, wait, and watch for 3 months to see how much the curve progressed. We were scheduled to reconvene at the beginning of January. I’m not an orthopedic, but I would think if you know it’s progressing, you wouldn’t wait to see how much it is progressing. That was of course, before I know what I know now. If you have a feeling in your heart and your gut, then listen.We completed the MRI about a week later, which in and of itself was a hard experience having your little undergo anesthesia for the first time. Little did I know that would be one of many times that he would undergo anesthesia. Thank God that our brother-in-lawis an anesthesiologist and was able to explain everything to me prior to and after the MRI. He has a gift for calming nerves and easing anxiety by logical explanation. So, when they walked me back in the MRI room and they explained that Hunter may act like he’s suffocating and his eyes might roll back in his head, I was able to shake my head with confidence that I understood that it would be okay. He was right, it was probably harder on this Momma that it was on our little man.  The MRI revealed that his spinal cord was tethered and that he had several syrinx or cysts within the spinal cord. We were told that the syrinx were fairly common, but the tethered cord would have to be dealt with. Normally, the spinal cord hangs loose and is able to move freely with growth, but his was pulled taut. I believe that the spinal cord of most individuals extends to end between the L1/L2 vertebrae and Hunter’s extended to the L4 vertebrae, so it was pulled abnormally low. We were then referred to a neurosurgeon, whose first available appointment was about six weeks after his MRI.

Sit and wait, sit and wait. 
I’ve decided, waiting is for the birds!  
Needless to say, Mama Bear came out and frantically started researching and looking for answers. In searching, my mom and I both came across a website for the Infantile Scoliosis Outreach Program (ISOP) and I found myself engrossed in all of the personal stories on their website. I reached out and called ISOP hoping that they could help me find some answers. That was the best phone call that I have made throughout this journey. Heather Montoya, the founder of ISOP, patiently listened and solidified my fear that waiting was NOT the answer. She asked for Hunter’s information, x-rays, and a picture of our baby. She then took our info and spoke with the chief of staff at Texas Scottish Rite Hospital, because they are the best fit for this condition in the state of Texas. Shortly thereafter, Heather worked her magic and we received a call from Scottish Rite. We were told that Hunter needed to address the tethered cord issue before he could go through the admittance procedure for Scottish Rite.

3-pic

This was taken at the end of October 2013 right after his first x-ray. Hunter is actually standing straight or straight for him anyway, while holding onto the coffee table. As you can see, the curve of his spine is very pronounced and has gotten much worse since then.

December 17th came, and we met with the neurosurgeon, whom we adore and would love him to be Hunter’s primary doctor. He has a wonderful bedside manner and great sense of humor. He was very matter of fact and told us that Hunter would have to have surgery sooner, rather than later, to release the tethered cord. My husband, James, jokingly said, “We’re available tomorrow”, to which we were told that the surgery would actually very likely take place before the 1st of the year, especially since there were a lot of cancellations due to sickness. We received a call two days later on December 19th that he was scheduled for surgery on December 23rd and would be in the hospital until December 25th. 
Sit and wait, sit and wait, sprint! 
We were so thankful that the neurosurgeon was proactive and was able to get him in.   The surgery was stressful for Momma and Daddy, but very successful for Hunter. We stayed in the hospital from December 23rd through about noon on Christmas Day.

I kept in contact with the nurse from Scottish Rite and as soon as Hunter was released after surgery we started moving forward with the paperwork for Scottish Rite. We were accepted into the Scottish Rite program and were assigned a consultation date of February 19th.   We still had our appointment with our orthopedic in Houston at the beginning of January, so James and I discussed and decided to keep the appointment to see what he had to say.  I’m an educator and coach at heart and am married to an engineer, so it’s our nature to research and prepare. By this juncture, I had joined a Facebook group for parents of early onset scoliosis and Mehta casting, and was completely engrossed in every aspect of this new found road that we were traveling.  James and I went to our orthopedic appointment at the beginning of January armed with knowledge and I was ready to strike. I knew in my gut that we weren’t supposed to be treated there, but felt as though I should peruse every inch to make certain we were on the right path for Hunter. I walked into the office with skepticism and left fuming. James asked if I wanted to be mad at him, but the truth is that I just wanted to be mad. Mad at the fact that, while I’m not a doctor/orthopedic, I know that our orthopedic hadn’t done his homework. It is black and white to me. You can’t profess and implement a the Mehta philosophy and not believe in it and all of its parts. As a parent to a little man that can’t yet speak for himself, I have to question and challenge, and honestly he didn’t meet the grade. In parent/coach conferences, I used to always reassure every athlete’s parents that they were their child’s greatest advocate. That sentiment has never hit home more to me than it does now.  Luckily Scottish Rite was in the horizon and we are now onto bigger and better things. The lesson, advocate for your children and what you believe in. Don’t settle for what someone tells you, research and learn the answer for yourself and challenge what you feel isn’t right. Most importantly fight and listen to your heart.

 

In preparing for a competition or an upcoming challenge, it is imperative that you have a game plan. That game plan may change depending on the opponent or scenario, but ultimately it’s reflective of your personnel and philosophy.

With Progressive Infantile Scoliosis, the game plan is to seek treatment as soon as possible and preferably before the age of 2. With little nuggets like Hunter, they are growing at a rapid rate, and therefore the scoliosis can rapidly progress without treatment. The sooner you treat it, the better the chances of success. Without treatment, it can lead to a lifetime of problems with deformation of the ribs, reduced lung capacity, etc.

You’ve met the personnel, our little man, Hunter, with a fighting heart. Now for the philosophy to beat this condition. PIS is a treatable scenario, but as I said before, it is very time sensitive. The ortho that we met in Houston was all about “wait and see”. His philosophy was that you perform treatment as more of a holding pattern and precursor to surgery in the early teen years. I don’t know about you, but I would rather come out fighting and try to score first, rather than sit back on defense.

Through research, and information sent to me by Heather Hyatt-Montoya, I learned of the studies of Dr. Min Mehta and her method of casting little ones with infantile scoliosis. Her mindset and philosophy was that with the cast, a child can have a gentle form of correction to guide or retrain the growth of the spine. Dr. Mehta personally trained the doctors at Scottish Rite. They adhere the Mehta torso casts in succession for a period of time determined by the severity of the curve and progress of the child. Each cast stays on a child for an average of about 8 weeks. Prior to being admitted to Scottish Rite, I had already made up my mind and heart that that was where we were supposed to be. We must allow him to be treated in the best environment possible in the most least invasive way,

 

 

Our consultation appointment with Scottish Rite was February 19, 2014, the doctor and his team came in and examined Hunter, watched him walk, held him. Hunter, of course, begins flirting with the nurse and then kissing me on the cheek to see what they would do.

We asked a number of questions and the orthopedic said that he would like to have X-rays done and then move forward with casting as soon as possible. He indicated that Hunter will be in a cast for a minimum of 1 1/2 years and he removes and replaces the cast every two months in the same procedure, so he will undergo a lesser amount of anesthesia. Music to my ears!

He said that his schedule was pretty tight but was sure that they could work us in. His nurse piped up that she thought that they had an opening for Friday and that she would check and get back with us. Friday?! What a difference a doctor makes!

Hunter completed the X-ray, was then measured for a scoliosis study, and was squeezed into the schedule for Friday. Praise God for leading us to Scottish Rite and giving the doctors the understanding of the sensitivity of time!

We began preparing as best we could for Friday by buying clothes (he will have to go up a shirt size), diapers (he will have to go down a diaper size), things for the car trip home in case he gets sick, and things to occupy little man as best we can. After our appointment we went to the home of some of our friends so Hunter could rest and stretch his legs.

Prior to making the trip to Scottish Rite, Hunter had had two X-rays with his previous orthopedic. One X-ray was taken at the end of October and one was taken at the beginning of January. The first number that we were given by the initial ortho, I believe, was 37 degrees. We were told in January that the curve had increased 7 degrees from October until January. Generally curves greater than 20 degrees are observed because they likely may resolve on their own. Curves greater than 20 degrees are addressed with some form of treatment.

(Mehta casting, while the most gentle and effective cure, is not common practice for all orthopedics. Reason being, a good number of orthopedic surgeons want to do surgery or use casting/bracing as a holding pattern prior to doing surgery. Remember, difference of philosophy. )

If a curve is greater than 40 degrees, it can be decreased, but may never become completely straight, but many get close. About .1% of children with Progressive Idiopathic Infantile Scoliosis have curves greater than 40 degrees. We knew we were probably in the danger zone. The more that I have read and the more parents that I have talked with whose children have this condition, made me have the realization that Hunter’s X-rays with the first orthopedic were incorrectly done. An accurate X-ray can be done standing or lying down. The protocol is that the arms must be at the side and not pulled above the head. If the arms are above the head then spine would be lengthened and the curve would appear straighter. His arms were pulled above his head in both previous X-rays. That in and of itself makes me want to scream! Again we are on the best path now, but incompetence makes me furious. Parents, please question what your child’s doctor does or doesn’t do for their ultimate well being. You are their voice and I can’t stress that enough.

So, prior to our first X-ray at Scottish Rite, we knew that Hunter’s numbers could very likely be much greater than what we had thought they were. His doctor solidified our fears as he told us that his curve was actually 60 degrees pre-cast. However, he also brought great JOY in the same sentence as he told us that his X-ray in cast showed that with the traction and compression of the cast that his curve was 28 degrees!

X-ray before casting at 60 degrees.

X-ray before casting at 60 degrees.

Xray in cast at 28 degrees.

Xray in cast at 28 degrees.

Hunter is currently in the first of numerous casts to come. He is scheduled for his next cast on April 18, 2014. Children, especially our nuggets with scoli, are resilient. He has done extraordinarily well in cast and quite honestly, better than we ever anticipated. God has big plans for our little man, I am certain of that. James and I were talking with family recently and all agreed that he has the perfect personality for challenges such as those that he has, and will face. When Hunter was born, James joked about us not receiving an instruction manual before leaving the hospital. We could sure use one about now. The truth is, you have to go with the flow and try to adapt to the curves that life throws you.

 

-Dana Sitton

Sophia’s Story

sophia

Sophia Update 
sophia 2010September 28, 2010
Sophia’s spine continues to grow straight and de- rotated. We monitor with X-rays annually, unless we see something that would give us cause for concern and we would then X-ray sooner. After successful EDF/Mehta casting 2007-2008, she wore a Providence Brace 8-10 hrs a night from Aug 2008-May 2009. Then nothing- just on going PT for low muscle tone and lax ligaments and monitoring of spine until “skeletal maturity”. She just turned 4 last week and is a happy, tall, healthy, active girl thanks to ISOP and early intervention!

Original Story:
We were blessed with a beautiful baby girl on September 22, 2006. My husband and I were delighted, as was her 2 year old big brother Samuel. Sophia was a healthy, full term infant. However, despite our best efforts to protect her during cold and flu season, she kept getting pneumonia and was hospitalized for it the first time at 2 months old. She also had recurrent atelectasis, which is the collapse of part of a lung caused by a blockage of the air passages (bronchus or bronchioles) or by pressure on the lung. Hers was mild and just a small pocket of her lung would collapse. She also suffered from mild sleep apnea, severe reflux (GERD) and gastric delay emptying (food/liquid did not move through her stomach like it should and would just sit there, often coming back up when she attempted to consume her next meal hours later).  She seemed to have low muscle tone (severe hypotonic we later learned). She was like a jello baby and could not sit up or even be propped up without falling over like a rag doll.  When we picked her up under the arms, it was as if she might slide right through our hands. Right before her six month check up, her daycare provider discovered her scoliosis.

That started our long and winding journey to countless doctors beginning with her pediatrician, who then sent us to a neurologist. He then ordered an MRI of her brain and full spine under anesthesia which showed a very small syrinx in her lower spine (a fluid-filled cavity within the spinal cord. We were told that this is something often seen in normal individuals and does not cause scoliosis or need treatment.). We were then sent on a search for a pediatric neurosurgeon. The first neurosurgeon we consulted later pulled in his orthopedic counterpart, who by the grace of God was familiar with Dr. Mehta’s EDF (elongation, derotation, flexion) casting method and early treatment for progressive infantile scoliosis (also the first to provide an actual diagnosis for Sophia’s condition). We knew it was progressive since we had multiple chest x-rays from 2 months old to 6 months old and in hindsight could see the curve forming, plus an RVAD measurement 32 degrees. We were then faced with determining a treatment plan for her. We consulted three well respected pediatric orthopedic surgeons from around the country and received three different treatment recommendations: 1) Brace her to slow the progression 2) Cast her immediately in a traditional Risser cast since it was progressing so quickly and she was too young for spine fusion. However, he was concerned that the cast might make her pulmonary problems worse and could cause chest wall deformity. He warned us that she would face surgery in her early life and beyond. 3) Travel to Shriners Hospital in Erie, PA for Mehta casting specifically since only a few places in the US offered this treatment with the correct equipment and training.

I then dug deeper into my research on Risser vs EDF/Mehta casts for non structural progressive infantile scoliosis.  After a few long nights of reading everything I could find in countless websites and medical journals, I found the ISOP site www.abilityconnectioncolorado.org/newsite/infantilescoliosis  and the CAST support group. Heather and the others provided the critical information and support that allowed us to make an informed decision regarding the right treatment for our daughter.  By finding out about Early Treatment when Sophia was so young, we were able to harness her rapid growth during the first two years and not just slow the progression but correct it! It also treated the rotation of the spine, which in Sophia’s case we were told was significant. This treatment has allowed her to escape a childhood filled with painful and dangerous surgeries required to save her life. Instead, we were able to gain access to a non-invasive, gentle form of correction that has “taught her spine to grow straight”.

We drove from our home in Indianapolis, IN to Shriners Hospital in Erie, PA to have Sophia’s first Mehta cast applied in June 2007 when she was 8 months old. She had a total of 8 casts done in 14 months. Sophia transitioned to a Providence Brace in August 2008, which she wears 11 hours at night only. She can be a normal, healthy child the rest of the day.  Check ups with x-rays in October 2008 and March 2009 showed that her spine is staying straight and de-rotated. We will have another check up in 4-6 months and continue to brace at night until then.
Her sleep apnea has resolved, her reflux and GI problems are greatly improved and she is eating and growing like crazy (90+ percentile on height and weight now!). While her muscle tone has improved, she is still on the low side. She is prone to pulmonary issues, but went an entire year without any problems. Overall, by correcting her spine, we have greatly improved her overall health. We also saw a genetics specialist who tested for everything they could test for and found nothing. So Sophia really is one in a million!

Below are the before and after measurements of each of her 8 casts. Due to many factors, including doctors changing hospitals, the chance to be treated by Dr. Mehta herself, and finding the right treatment fit with a particular program, Sophia was treated at multiple locations across the United States. We are grateful that we now have options when just a few short years ago, there were only two locations in the US that had the training and proper equipment to provide this life saving treatment. And before that none! I can’t thank ISOP and Dr. Mehta enough for all that they have done.  Their commitment and dedication to this cause truly has changed the course of Sophia’s life. We will be forever grateful!

Cast#1: June 7, 2007
COBB 36 degrees out of cast -> 29 degrees in cast
RVAD 32 degrees out of cast -> 27 degrees in cast
Significant rotation

Cast#2: August 9, 2007
COBB 36 degrees out of cast -> 25 degrees in cast
RVAD 33 degrees out of cast -> 22 degrees in cast
Significant rotation

Cast#3: October 15, 2007
COBB 22 degrees out of cast -> 17 degrees in cast
RVAD 18 degrees out of cast -> 35 degrees in cast

Cast#4: December 11, 2007
COBB 20 degrees out of cast -> 7 degrees in cast
RVAD 35 degrees out of cast

Cast#5: January 28, 2008
COBB 20 degrees out of cast -> 0 degrees in cast
RVAD 35 degrees out of cast

Cast#6:  February 14, 2008
COBB 19 degrees out of cast -> 11 degrees in cast
Significant rotation

Cast#7: April 10, 2008
COBB 11 degrees out of cast -> 7 degrees in cast

Cast#8: June 3, 2008
COBB 11 degrees out of cast -> 5 degrees in cast
Minimal to no rotation

Transitioned to Brace: August 2008
COBB close to 0 degrees out of cast (too small to measure)
No rotation

xraycomp

Spotlight On: Jackson

Everyone who meets my son, Jackson, immediately thinks he is quite the charmer! I sincerely believe that is partially due to his innate personality, and partially due to the resilience and character he has developed on his journey with Progressive Infantile Scoliosis (PIS).

Jackson was born on May 5th, 2010, weighing a very average 7lb 6oz. He very quickly became the love of my life and a very happy baby. Other than his reflux, Jackson seemed to be healthy and thriving. When Jax was 4 months old, my husband expressed a concern to me that he thought Jackson’s back looked crooked. I didn’t think much of his comment and assured my husband it was probably because Jackson’s core muscles weren’t yet strong enough to support his weight. The very same day, my mother said to me: “Sometimes when I’m rocking Jackson to sleep, it feels like one side of his back is bulging.” Suddenly, I began to worry that something might be awry with my seemingly perfect little guy.

Being a pediatrics registered nurse myself, I felt ridiculous making that first phone call to Jackson’s pediatrician (where I worked at the time) and asking for an appointment because “Jackson’s spine looks crooked.” In retrospect, it was the most important phone call of Jackson’s life. One glance at Jax, and his doctor immediately referred us to a well-respected children’s hospital for an orthopedic consult. Although, only one week earlier, Jackson had had his 4-month well check up, and his spinal curvature had been completely overlooked. *** An Infantile Scoliosis exam is now part of routine baby well visits at Jackson’s pediatrics office! ***

As soon as we returned home from the pediatrician’s office, I went into research mode and began searching the internet for reliable literature on Infantile Scoliosis. I found very little information. What I did find, presented only “doom and gloom.” I even brought out my pediatric nursing textbook which contained exactly one sentence on the subject: “Scoliosis with an onset before age 3, having a very poor prognosis.” My head was swimming, my heart was pounding, and I felt utterly alone. That’s when I discovered the website for ISOP www.abilityconnectioncolorado.org/newsite/infantilescoliosis and soon connected with Heather on the telephone.

My discovery of ISOP was truly a turning point for me. It gave me valuable resources and the confidence to utilize them. In a matter of days, I cancelled Jackson’s appointment with the local children’s hospital and made an appointment with the Shriner’s Hospital Network. Jackson was first seen in Philly at age 5 months. There, his first x-rays were taken, revealing a COBB of 20 degrees and an RVAD of 18 degrees. Because Jackson’s measurements were truly “borderline,” we were instructed to watch and wait for 3 months. During those 3 months, Jackson had an MRI which was thankfully normal. From age 5 months to 12 months, Jackson’s curve and RVAD (rib vertebral angle degree) stayed mostly stable. We continued to “watch and wait” to determine if my son’s scoliosis was of the progressive nature, or not..

Suddenly, Jackson’s x-ray taken at 14 months old revealed a COBB for 45 degrees. His scoliosis was now clearly progressive, and it was time to take action! Jackson was scheduled for his first Mehta cast at the Shriner’s in September 2011, when he was 16 months old. That first cast was difficult on all of us – probably more so on mom and dad than on Jackson. It took our little man about 2 weeks to re-learn how to sit without support, play on the floor with his toys, and run around. Soon, however, he was back in full swing!

 

Jackson’s first 5 casts were applied at Shriner’s in Philadelphia. Thankfully, the combined efforts of those 5 casts corrected Jackson’s standing, out-of-cast COBB from 45+ degrees to 18 degrees. After Jackson’s 5th Mehta cast, we made the decision to transfer Jackson’s care to Shriner’s Hospital in Greenville, South Carolina. We wholeheartedly believed in Dr. Min Mehta’s EDF casting methods and the integrity of her work and wished to continue with Mehta casting to treat (and hopefully cure) Jackson’s PIS. Our family just needed to do so in another place where where Dr. Mehtas techniques were being followed to the letter. ie: Jackson was able to benefit from a cast without shoulder straps because the location of his curve was low. A curve above T-8/9 is best addressed by a Mehta cast with shoulder straps.

The Shriner’s Hospital in Greenville, SC is an incredible place! Jackson now looks forward to going for his specialized EDF Mehta Casts. Prior to Jackson’s 8th casting, his standing, out-of-cast COBB measured only 4 degrees! Jackson’s orthopedic surgeon in Greenville is strongly committed to maintaining this correction, so he has continued to cast Jackson in order to train Jackson’s muscles and ligaments to maintain this straight spinal alignment. In March 2013, Jackson had his 9thMehta cast applied. For the first time, we were instructed to return to Shriner’s Greenville WITHOUT REMOVING this 9th cast because there is a possibility it will be used to construct Jackson’s removable brace. Jackson’s doctor is aiming for a 0 degree measurement before graduating Jackson into a brace.

Jackson-spotline_comparisonSB

When we returned to Shriners on May 22, 2013, Jackson’s x-rays showed that his spine measured 0 degrees! He was completely straight! Jackson’s doctor opted not to cast Jackson a 10th time, but instead to mold him for his TLSO brace which he received in early June. We continue to be overjoyed and utterly thankful for all those who played a role in CURING our son! “Cure;” what am INCREDIBLE word!

Still, Jackson will continue to proudly lift his shirt and show the world his BRACE! He is so proud to wear his new brace and often proclaims “I love it!” to anyone who asks. It has not hindered his spirit in the slightest.

In his Mehta cast, Jackson: rode a rollercoaster, becamea big brother, took a train ride, petitioned Duck Tape Brand to donate a display to Shriner’s Greenville, hunted for Easter eggs, met The Wiggles, watched a monster truck show, played soccer and baseball, learned to use chopsticks, went trick-or-treating, traveled to DC, went to preschool, and developed wisdom well beyond his years. He is a true hero in my book!
before and after xrays Jackson’s measurements: (standing, out-of-cast)
Prior to Cast #1: COBB 45+, RVAD 30+
Prior to Cast #2: COBB 40, RVAD 26
Prior to Cast #3: no standing, out-of-cast x-rays
Prior to Cast #4: COBB 22, RVAD 22
Prior to Cast #5: no standing, out-of-cast x-rays
Prior to Cast #6: COBB 18, RVAD 4
Prior to Cast #7: no x-rays
Prior to Cast #8: COBB 4, RVAD 0
Prior to Cast #9: no x-rays
Prior to TLSO Brace: COBB 0, RVAD 0

Jennifer (Jackson’s Mom)
Pediatrics Nurse
Photographer with Favorite Things Photography

“We are the music makers, and we are the dreamers of dreams.”
– Willy Wonka

Spotlight On: Andrew

Fight for your babies, mamas and daddies

Andrew’s life started with a full term pregnancy and a healthy baby born to a couple just about to celebrate 3 years of marriage. This story your about to read is long and includes a lot of details that might not seem significant to his scoliosis journey but I think it’s important to paint as clear a picture as possible of what life was like for us and hopefully encourage you when the road feels dark and overwhelming and give you hope that you can make it through this and that it is worth it.

At 10 days old, Andrew started “spitting up”. (more like a waterfall pouring out of his mouth) Seemingly everything that went in his tummy, was coming right back out. After talking with the advice nurse, we took him to the hospital within just an hour or so of onset. The amount of spit up combined with his tiny newborn size, he was already dehydrated on arrival. He wouldn’t hold anything down so an iv was needed. After the hospital tortured my tiny little 10 day old baby trying to get a needle in, they decided to transfer us to the children’s hospital. After admitting Andrew as inpatient, running a series of blood tests, stool and urine samples, getting an iv in for 4hours before it fell out of his scalp, he kept just enough in to gain a few ounces so they sent us home saying he must be fine. The vomiting continued and we were seen outpatient for imaging and weight checks as he struggled with dangerous weight loss. After everything was ruled out, he was finally diagnosed with reflux. Andrew’s reflux was so severe that he was diagnosed as failure to thrive and was in a constant battle to get anywhere near the growth chart.

At a feeding clinic for the reflux, they did a full exam and in addition to being low tone, I was told Andrew had torticollis. I was given all kinds of suggestions and exercises to do at home to strengthen his sternocleidomastoid muscle. Nothing worked. At 6 months old, Andrew was referred to physical therapy through Early Intervention. On our very first visit, the PT asked to strip Andrew down to diaper and look at his whole body. She looked at his spine and it was very clearly curved. She explained to me that scoliosis wasn’t a life threatening situation and some people live with it for a life time. She called the pediatrician and told him her findings and Andrew and I went into see him for an appt. Andrew was sitting on my lap in a diaper with his back to the door when the doctor walked in and he saw the curve with the naked eye immediately. We were both baffled. This giant curve seemed to appear overnight. We had been in clinic several times a week for months for reflux and growth problems and had never seen a curve. It’s hard to know now if it had been obvious much longer and we just missed it focusing on other issues or if it truly progressed as rapidly as it had seemed.

The pediatrician referred us to an orthopedic specialist at our local children’s hospital where they did xrays and confirmed the scoliosis. He measured Andrew’s film at 45 degrees and told me we would need an MRI to look for any congenital abnormalities that might not show on the xray. The ortho told me there was no rush. This wasn’t anything to worry about right now and sent us on our way. Leading up to this appt, I had googled unsuccessfully night after sleepless night trying to learn something about scoliosis in infants. At one point the ortho mentioned cast and that one word is what led me to www.abilityconnectioncolorado.org/newsite/infantilescoliosis and the Yahoo support group. That one word he casually threw out is what essentially changed our lives because it got me on the right path.

I didn’t hear anything about scheduling the MRI for a few weeks, so I called and finally got it scheduled, again with no urgency except for my own. The MRI results were sent to a neurosurgeon in the same children’s hospital as our ortho. The radiologist report said there was no evidence of tethered cord. Thankfully the neurosurgeon read the films himself because Andrew did indeed have tethered cord as well as syringomyelia. We had a follow up MRI to check for chiari malformation which was negative.

The ortho wanted to just monitor Andrew without any intervention. Wait and see. My baby was struggling to survive with severe reflux causing failure to thrive, delayed gross motor skills, a tethered spinal cord and now an aggressive scoliosis that was trying to crush his heart and lungs and the doctor wanted to wait. Scary. Scary as a first time mom. Scary as any mom. Scary. Period. I didn’t know much about casting yet but I asked him if he had heard about Mehta casting because of what I had read and heard from other families on the Yahoo support group. He said he had heard of it and knew a doctor in New York that could probably talk him through it over the phone. I never went back to that doctor again. I’m sure he’s a very qualified doctor for other pediatric orthopedic conditions but it was clear progressive infantile scoliosis was not one of them.

Andrew was unable to sit unassisted or bear weight on his legs at all at this point. His motor skills were getting further and further behind and his outlook looking more and more difficult. At 11 months old, Andrew had surgery to release the tethered cord. The surgery was smooth and aside from a site infection that cleared with a round of antibiotics, there were no complications.

After researching options and talking with families that were gracious enough to share their very personal stories, I knew where I wanted to go for treatment of Andrew’s progressive infantile scoliosis. I knew what I wanted for my son but I didn’t know how to get there. I knew I needed to travel out of state to get to the hospital I could trust to treat this very complex condition. I knew I couldn’t afford it. Shortly after Andrew was born, I quickly became a single mom despite all my picture perfect plans for our family. I was doing this alone and I didn’t have money and I was exhausted and scared and had no support system behind me.

There is a hospital local to us that does casting. They call it Mehta casting. They have the proper casting table. I knew in my heart though that they weren’t doing proper Mehta casting and I knew in my mommy gut that this wasn’t the right place for us to be. I applied for that hospital because I needed a plan. I knew I didn’t have to go there but if I couldn’t get to the out of state hospital, this was the best I could do. I felt sick about it, but I had to at least do something to start. Precious time is ticking. Early treatment in vital. These words kept repeating in my head day and night. We got accepted to this hospital and I felt zero relief. I was heart sick about it.

With our appt scheduled at the local casting hospital, I finally got the courage to apply to the out of state hospital. I didn’t know how I was going to get there. I didn’t have anything figured out but I knew that’s where we needed to be. That feeling never wavered in my heart. I knew.

While waiting for paperwork to process at the out of state hospital, we had a consult with the local casting hospital. You know those situations in life where you just know something isn’t right? I felt that. I felt it deep. The doctor did not have a bedside manner that gained my trust, he was shouting to a staff member in the hallway right in our sight. I felt awful there. When I asked questions, I was treated poorly and as if I shouldn’t be asking the doctor questions. I was the mom, he was the doctor. He was the boss and I wasn’t. My heart hurt. I was scared for my son and did not feel good about this connection or trusting my tiny little person in this doctor’s care. I set the casting appt there because I had to. I couldn’t travel out of state. I couldn’t afford it. I couldn’t do it alone. My husband was gone, I needed to work.

Then the letter came from the out of state hospital accepting my son. I was over the moon. I cried tears of joy and held my baby and assured him everything was going to be okay. We were going to make it. We were going to do it. I didn’t know how but it was happening. It. Was. Happening.

The care coordinator at the out of state hospital and I had a long phone conversation discussing what was next and what to expect and she answered all my questions. I just needed to wait for a call back with a casting date and we were set.

Then she called back. She told me the doctor at the out of state hospital reviewed our case and determined our local casting hospital could handle it. I was devastated. I hung up the phone and cried my eyes out. Heart broken and scared. Again. I was in the car when I got the call and as soon as I got back home, I went straight to the yahoo group and shared what was happening. We were being stopped from going to the hospital I trusted by logistical red tape. At this point, the families on the support group were my life line. They knew. They understood.

A family on the Yahoo group who are patients at the hospital I was trying to get Andrew to heard my cry for help. They talked to the care coordinator at their next visit and explained our story and my heart for my son to be treated there. The family came back and told me they found out I could fly down to the out of state hospital for a clinic visit to meet the doctor and let him see my son in real life rather than his medical file and see if he would reconsider Andrew as a patient.

Time is ticking. Early treatment is vital. The words continued to echo.

I went ahead and kept the casting appt at our local hospital hoping that any cast would be better than no cast. We got Andrew’s first cast locally and I was so sad. The cast didn’t have plaster of paris, it didn’t have a cut out in the back for rotation, it wasn’t perched on his hips which caused it to shift around on his tiny body. I couldn’t wait for our out of state clinic visit to meet the doctor I wanted and to show him the type of cast that was available to us locally.

2 weeks after Andrew got his local cast, we were on a plane to the out of state hospital. We had a clinic visit, I shared my concerns with the doctor, he did a thorough exam of Andrew, re-measured his spine which was actually 60-65 degrees with rotation, and we left that day officially accepted as patients to the hospital I trusted and knew without a doubt was doing proper Mehta casting and had a high case load with a lot of expertise for cases just like Andrew’s. We still had a very long road ahead of us but for the first time, I felt some peace that everything just might be okay.

We flew back a month later for a casting date. Andrew woke up from anesthesia but his oxygen saturation was low. He was very worked up in recovery, so they let him come back to his inpatient room still on oxygen so he could be with mom and hopefully calm. In addition to low O2 sats, he wasn’t acting like himself. He wasn’t recovering from anesthesia like he always has at home. He started becoming weak and unresponsive. The room filled quickly with doctor, PA, anesthesiologist, nurse, charge nurse….it was suddenly all hands on deck. They took Andrew from my arms and put him on the hospital crib. Checking his cast, his vitals, everyone talking collectively and no room for mom to be near anymore. I was terrified. He was given narcan to reverse all the meds he had on board and that brought him back to baseline with the exception of oxygen. He wasn’t able to breathe room air but was responsive again and it looked like we were out of the danger zone. After much review and discussion, it was determined Andrew was not acclimating to the change in altitude from our home state to the hospital. I was heart sick. I have just fought against so many challenges to get him here and here makes him sick.

We came home and saw a pulmonologist. He diagnosed Andrew with restrictive lung disease and agreed Andrew could safely fly and be at elevation….with oxygen. A baby on oxygen just to get to an out of state hospital to get a cast that some people tell me we can get done locally? My heart knows otherwise. We powered through. I started the fight to get oxygen equipment. Insurance was refusing it and now I’ve got travel expenses and portable oxygen rental. There is no way I could afford all of this. I was told that some local shrine’s help with travel expenses but because we had a local hospital we could go to, that there is no way they would cover our expenses to get to a different one.

I tried anyway.

They accepted us. No questions asked.

I got approval to pay for our travel to the out of state hospital without an ounce of hesitation from a group of kind hearted generous men who had never even met us before.

So, 6 weeks after our first out of state cast, we were ready for the next cast trip with oxygen in tow. Let me just brag on my son for a minute. That kid is amazing. He played and laughed and giggled and could care less that he needed a canula in his nose to breathe. Kids are strong resilient little people and my son was no exception. Never ever doubt your kiddos or let your fears control their outcome. They got it handled. Totally.

After months of advocating and fighting like crazy, insurance approved the oxygen. When it comes to your kiddo’s health, fight. When you feel like giving up, fight. When it feels like you’re totally defeated. Fight more.

We travelled for a series of 8 casts, 2 full time braces and 2 night time braces. There were times of celebration and times of defeat. When we got to our 6th cast, things started to feel a little dark. We weren’t making progress and my dreams of a cure seemed farther and farther away. Guess what? Good doctors don’t quit! The PA gave me a pep talk and told me we’re going to keep going. We’ll keep going as long as we have to. We’re not giving up. The very next cast, Andrew’s spine was completely straight in cast. We went from fear to victory in ONE CAST!

We casted for 14 months, we braced full time for a year, we did night time bracing for 6 months…..Andrew looks phenomenal. His neck straightened, he learned to walk, he learned to run and his spine is completely straight. 2 ½ years ago doctors told me he would need spinal fusion in a year. 2 ½ years ago doctors said his outlook was poor. 2 ½ years ago, I am the only one that believed in a miracle. Today, we have it. Today, we are celebrating a straight spine in my son’s body. We gave up baths and sand and beach days for a while but the rest of my son’s life is saved. Absolutely none of what we had to miss matters now, not one single thing.

Metha casting works. Early treatment can be a cure. Fight for your babies mamas and daddies. It’s worth it.

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Brayden’s Story

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We were so excited when we found out we were pregnant with our first child!

On Tuesday, October 5th, 2010, Brayden Richard was born via c-section at 11:33 am. He came out screaming and hasn’t stopped talking since.

After his 2nd appointment with the pediatrician we were off to the local children’s hospital for testing when Brayden was 10 days old. He was having troubles keeping food down and I was breastfeeding at the time. He was diagnosed with reflux. We ended up seeing a gastroenterologist and had a couple more tests run to make sure there was not anything else wrong. Everything led us back to Brayden having reflux.

Being first time parents we were worried about our son getting enough nutrients after being diagnosed with reflux. Little did we know this was just the beginning of what was yet to come.

Between the age of 3 and 4 months old, Brayden has been in the hospital with bronchiolitis twice and was also diagnosed with torticollis. We were becoming very familiar where things were located at our local hospital. Our pediatrician recommended physical therapy so that’s what we did.

At 5-month’s old, we noticed a rib hump on his chest. We asked his pediatrician about it. He said it was probably extra cartilage and to monitor it for a few weeks. If it got worse we needed to call and he would get us in for an X-ray. It was not any better and seemed to be getting worse so we went for the X-ray. Our pediatrician called with the results and we were not prepared for what we were about to hear. Honestly, can anyone ever be prepared for hearing something is wrong with your child?

We got in to see the Pediatric Orthopedic Surgeon within a couple of weeks. He confirmed the diagnosis of Progressive Infantile Scoliosis (PIS). He had convinced us that in a lot of cases, this corrects itself and to continue physical therapy and come back in 4 months and have x-rays taken again. You know…the watch and wait game? So we played it because we did not know any better and trusted our doctor. He seemed to be doing better at 10 months when x-rays were taken. He said we need to wait until Brayden is walking to get a “true” reading on the x-ray and this would give a better idea if his PIS was correcting itself or getting worse. So we continued physical therapy and played the watch and wait game again.

Brayden began to walk at 12 months old and at 14-months old, we had x-rays taken again. We definitely were not prepared for what we were about to hear. The physical therapy prescribed was not helping Brayden and his curve was now at 42 degrees. The doctor recommended casting but had only had one other case that was casted in a Risser cast as he was not familiar with Early Treatment with Mehta’s specialized EDF casting techniques. Brayden’s doctor advised us to get an MRI to rule out any other issues that may be causing his PIS. He also recommended that we get a second opinion. He was very helpful and answered all our questions.

Within a couple of weeks, Brayden had an MRI done. We were not anticipating anything to unusual to come from this but to confirm his PIS. Nope, we were wrong again. He did not have a chiari malformation yet but there was a possibility he could form one as there were signs of this on his MRI. Luckily this was not anything to be worried about at the moment and was not causing any other issues at that time. The doctor recommended we do routine MRIs every so often to make sure it did not form into a chiari malformation.

After this news, we spent the next couple of days researching for other options for our son. We found the ISOP website and CAST infantile scoliosis Yahoo Group. Both of which were a HUGE resource for us getting the information we needed to make the best decision of treatment for our son.

We found a doctor at Cincinnati Children’s Hospital Medical Center (CCHMC) about 2 hours away from our home. He confirmed his curve was 42 degrees and said Brayden was a perfect candidate for the ET with Mehta’s specialized casting. We were able to get in for casting the next week. It only took him a short while to figure out how to get around with it on. He continued to sleep on his belly as he always had and nothing seemed to bother him.

Brayden is down from 42 degrees to 25 degrees and in his 5th cast currently. Although we miss allowing him have bubble baths, playing in the pool and the squishy hugs, we know that this is just a small sacrifice for improvement to his future health.

Recently, Brayden had another MRI on his brain and upper spine to check the possible chiari malformation. We had great news from his neurosurgeon. This has cleared itself up and there are no possible signs of any chiari malformation. Yeah! We were so excited about this for us and Brayden. We are getting there one step at a time. God is good! All the time!

The last couple of years have been bumpy but we have met many friends along this same path and together we will fight infantile scoliosis thanks to Heather and Dr. Mehta who have helped pave the way for us!

Karleigh’s Cause – Parent Power in Action!

When their beautiful 15 month old daughter, Karleigh, was diagnosed with progressive infantile scoliosis (PIS), Kim Westmiller and her husband had no idea what they were up against. Fortunately, they were able to connect with Heather Hyatt Montoya and the Infantile Scoliosis Outreach Program (ISOP) for guidance, support and answers. Answers that led them to Early Treatment with Mehta Growth Guidance Casting that involves the application of specialized casts every 8 weeks that allow 3 year old Karleigh’s spine to actually grow straight. A gentle corrective method rather than invasive surgery and the resulting complications.

Thankful for their daughter’s progress, the Westmillers decided to hold an event that would celebrate Karleigh’s health and success while raising money for ISOP, making sure that support continues for other parents of children with infantile scoliosis.

On October 20, 2013, The Westmillers hosted *Karleigh’s Cause* at Hearthstone Manor in Depew, NY, featuring Terry Buchwald and his wildly popular Tribute to the King (Elvis that is)! The community enthusiastically attended and supported the live and silent auctions raising well over $13,000!

The Westmillers are a powerful testament to Parent Power and their efforts and belief in ISOP are truly an inspiration. Our deepest thanks to you and Karleigh, as well as your amazing community, including the many event sponsors and volunteers, for envisioning Karleigh’s Cause and making it a huge success. Thank You!

Karleigh’s Cause – A Parent-Initiated Event Benefiting ISOP

karleighs_cause_smWhen their beautiful 15 month old daughter, Karleigh, was diagnosed with progressive infantile scoliosis (PIS), Kim Westmiller and her husband had no idea what they were up against. Fortunately, they were able to connect with Heather Hyatt Montoya and the Infantile Scoliosis Outreach Program (ISOP). Through Heather and ISOP, they found answers to their questions and the resources that led them to Early Treatment with Mehta Casting. These specialized EDF casts are applied every 8 weeks and continue to have a straightening effect on 3 year old Karleigh’s spine.

Thankful for their daughter’s progress and wanting to give something back, the Westmillers decided to hold a special event that would celebrate Karleigh’s amazing success and also help raise money for ISOP so that other parents of children with infantile scoliosis could also access the kind of help and resources that they had received.

On October 20, 2013, The Westmillers hosted the first ever, Karleigh’s Cause, at Hearthstone Manor in Depew, NY. The surrounding community rallied around Karleigh’s Cause by attending the event, which featured Terry Buchwald’s, Elvis-inspired, Tribute to the King, as well as live and silent auctions to help raise money for ISOP. In total, the event raised nearly $14,000 for ISOP!

Karleigh’s parents are a powerful testament to the steady devotion and determination it takes to navigate the many health options and difficult decisions they faced upon learning of their daughter’s potentially fatal condition. Also impressive, is the selfless approach and tireless effort they put into making Karleigh’s Cause a huge success, ensuring that other families of children facing similar circumstances will have the needed resources, support and opportunities for treatment that ISOP helps provide.

Thanks to you and Karleigh, and the overwhelming support of your community, event sponsors and volunteers, Karleigh’s Cause was not only an amazing success but truly inspirational.

On behalf of the Infantile Scoliosis Outreach Program (ISOP) and the many families and children who will benefit from your generosity, we say, Thank You!

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Karleigh’s Cause – Depew, NY

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October, 2013 – Karleigh’s Cause – A Community Success!

The Power of Parents Karleigh's Cause
When their beautiful 15 month old daughter, Karleigh, was diagnosed with progressive infantile scoliosis (PIS), Kim Westmiller and her husband had no idea what they were up against.  Fortunately, they connected with Heather Hyatt Montoya and Infantile Scoliosis Outreach Program (ISOP), they found answers and resources that led them to Early Treatment with Mehta’s Growth Guidance Casting (MGGC).
These specialized casts are applied every 8 weeks and continue to have a straightening effect on Karleigh’s spine.   Overjoyed with their daughter’s progress and wanting to give something back, the Westmillers founded Karleigh’s Cause!  This family event was a celebration of their daughter’s success and a fundraiser for ISOP.Karleigh’s Cause was held October 20, 2013 at Hearthstone Manor in Depew, NY. The community rallied behind this young lady in full force with a full house in attendance to experience Terry Buchwald’s Tribute to the King, bid in the live and silent auctions, and generally have a blast! In total, the event raised nearly $14,000 for ISOP!  The Westmillers navigated a confusing array of health options and made some tough decisions in the face of their daughter’s potentially fatal condition. Let’s just say that they’re a true testament to PARENT POWER!   It was important to this family that other parents of children with PIS could access this priceless resource.We can’t say enough how grateful we are for all of your efforts that contributed so successfully to Karleigh’s Cause and to ISOP.  Your gift allows Heather to continue to champion straight spines for other children in Karleigh’s situation. The overwhelming support from your community created an event that was an amazing success and truly inspirational.  From the bottom of our hearts, thank you.Karleigh's Cause pic3

 

Olive’s Story

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Our daughter, Olive, was born on September 22, 2010 at 3:46pm. She was full term with no complications, aside from the umbilical cord being around her neck right as she came out of the birth canal. This was cut immediately and there were no issues following. While this was scary, we do know that the cord was not around her neck for long, as her heart rate was consistent all throughout the labor. Olive has had a very healthy childhood thus far with only a few bouts with allergies and ear infections. She has met all of her developmental milestones and is a very happy and outgoing child.

When Olive was about 3 months old we noticed that she seemed to favor leaning her head to one side, so we started propping her head up with a rolled cloth when she was sleeping in her carrier or sleep positioner. At 4 or 5 months we noticed that her back seemed to have a bit of a curve to it and we asked her pediatrician about it. We were told not to worry, that it would straighten up on it’s own.
At about 6 months, we noticed that as she was sitting up, her ribs would stick out further on one side than the other. Once again, we were told it would straighten up on it’s own, but we requested that our pediatrician refer us to an orthopedic doctor.

We got in to a doctor at Orthopedic Associates here in OKC in early August 2011. They took an x-ray of her there, but since she was not yet standing, we had a hard time getting a good look at her spine. They ended up having me “dangle” her in the air, which we now know was stretching her spine out and not giving an accurate look at the curvature. The doctor there told us that 80% of the time Infantile Scoliosis corrects on it’s own, but that he would recommend us to see an Orthopedic Surgeon in 4-6 months. We went ahead and scheduled the appointment with a surgeon at OU Children’s Hospital for December 6, 2011, wanting to get the appointment in on 2011 insurance.

At the appointment on December 6, they were able to do a standing x-ray of Olive’s back that showed her curve to be at 53 degrees. The doctor said that we needed to get her in for an MRI immediately to make sure she didn’t have any other issues causing the curvature. Barring those issues, he wanted us to start casting immediately. We were told that the casting procedure he does was not for correction of the curve, only for maintenance until they can do surgery when she is older. Needless to say, we left in a whirlwind of confusion, sadness and hopelessness.
We immediately got online and searched for a support group- we had been told that IS is very rare, but were hoping that someone out there could give us some encouragement and advice. We found both at the ISOP website, where we learned for the first time about Dr. Mehta and her IS casting technique. We immediately got on the message board there, and were connected with two families in Oklahoma who had children with IS. We have connected with both of those families- Jason & Hollie Lee (Jonas’ family) and Cyndy McKinney (Londynn’s family)- and they all have directed us to Salt Lake City Shriners Hospital, and specifically to Dr. Jacques D’Astous. We applied to SLC Shriners, and in a whirlwind of events we ended up getting an appointment for Olive to be casted just 3 days after submitting our application. We were on a family vacation at the time and ended up leaving the rest of our family and flying to all the way to SLC, not knowing at all what we were getting into!

At Shriners, they did another standing xray and found her curvature to be 73 degrees- a big jump from what it had been just a few weeks prior at the Dr. back home. Dr. D’Astous also did an xray where they held Olive’s head and feet and pulled her in opposite directions, to show how flexible her spine was. In this xray her spine was able to straighten to 25 degrees, which was a very good sign! They did the first cast and were able to get her spine to around 29 degrees in the after cast xrays- how amazing!!

We returned home and adjusted to life in the cast- no more baths or swimming, and we had to learn to be extra careful while eating, drinking, diapering, etc, to protect the cast. Olive had just learned to walk unassisted a few weeks before she was casted, so it was a BIG learning experience after the cast. She could no longer walk, sit up, stand up, roll over, etc, on her own. She just laid on her back and it broke our hearts! When she did get up and walking, she would fall easily and we were scared for her poor little head- we even considered getting a helmet for her in the first few weeks. Thankfully, though, after a few weeks she was able to build muscles that got her up on her feet and falling less often!

We’ve since had 3 more casts and are currently in our 4th cast. The 2nd cast kept us at the same 29 degrees, the 3rd cast got her down to 27 degrees and the 4th cast has her at 19 degrees! They are considering bracing after a few more casts, but they really think that they can cure her and bring her all the way down to 0 degrees!! We are so thankful to ISOP & Heather for pointing us in the right direction- our prospects here in Oklahoma City were not good, and had we not found Salt Lake City Shriners Hospital and Dr. D’Astous, Olive’s future would not be nearly as hopeful as it is now.

Picture 1- Olive, 14 months, before casting

Picture 2- Olive, 14 months, in first cast at Shriners Hospital

Picture 3- X-rays comparing before cast 1 (right) and after cast 1 (left)

Pictures 4 & 5- Olive, after cast 2, 19 months

Pictures 6 & 7- Olive, after cast 3, 22 months

Jake’s Story

Jake was diagnosed with infantile scoliosis at 3 ½ months old when an x-ray was taken to rule out pneumonia. My maternal instincts, however, told me something was not quite right before that. While holding him in my arms, burping him, and bathing him, I could feel that his little spine was bent. But I told myself that I was being paranoid–that he was just a baby he and just wasn’t very strong yet. The x-ray that confirmed our fears showed two curves: a right thoracic curve that measured 20° and a left thoracolumbar curve at 19°. Our pediatric orthopedist informed us that about 85% of infantile scoliosis cases resolve themselves, and told us to “wait and see.” Three months later, our next appointment with him showed promise. Or so we thought. His curves measured 20° and 14° this time, and we were confident that he would resolve, as was our doctor. Four months later the curves measured 26° degrees and 13° degrees. We passed the 25° threshold; it was time for treatment. The doctor recommended a brace to be worn 23 hours a day, and we decided to seek a second opinion.

This is where our research began. Thankfully, we found InfantileScoliosis.org on our first attempt to gather information. We were introduced to the idea of early treatment with serial casting as gentle treatment for Jake’s crooked back, and the video “A New Direction” with Dr. Min Mehta provided by ISOP (Infantile Scoliosis Outreach Program) changed the way we felt about scoliosis. It gave us hope. We were armed with information to take to our next appointment with a new pediatric specialist. This doctor measured the same x-ray (from the first orthopedist) at 24° and 18°. He told us he was not concerned about the severity in degrees, but the rotation of the second curve worried him. This doctor, too, wanted to “wait and see,” but we were afraid of progression. We had to convince him to brace Jake.

Jake was 13 months old when he had his MRI to rule out congenital abnormalities. The following week he was put into his first TLSO brace, which was to be worn part-time at night. We wanted full-time brace wear, but the doctor didn’t agree. One month later, the in-brace x-ray showed the first curve was nearly straight and the second curve was in the 30’s. This was the highest it had ever been, and we were scared silly. How could a curve progress that much in only two months? Our doctor told us to stay the course, and he’d see us again in five months. We argued that this was too long to wait, but he was adamant. We left there scared and confused.

In the meantime, I joined the online CAST Support Group and was learning more from experienced parents there, than from our own doctors. I read a lot of good things about the good people at Shriners Hospitals helping small children and getting great results with early treatment. We decided to send all of Jake’s x-rays and medical history to the Shriners Hospital in Erie, PA.,  to ask for a professional opinion from doctors who specialize in progressive infantile scoliosis. Their medical team agreed with our second orthopedist: the rotation of Jake’s second curve was definitely “concerning,” although they weren’t sure whether Jake was a true case of progressive scoliosis. They invited us to participate in the ETTP (Early Treatment Trial Project) in November, 2005, where we would meet Dr. Mehta and get her opinion about Jake’s condition. That same week, ISOP also invited us to participate! We felt it was meant to be.

Our experience at the ETTP was awesome! We got to meet several of the parents we had “spoken” with on the CAST support group. We were also introduced to Jake’s current orthopaedic surgeon, and we had the opportunity to have Jake examined by Dr. Mehta. X-rays taken there showed his curve had decreased 5° to 28°. The brace was working. Her opinion: if we were to continue bracing, it should be worn 23 hours a day. Yes, Jake was a candidate for early treatment with serial casting as well, if that was what we wanted. I asked many questions in relation to Jake’s scoliosis, and the conclusion was that Jake was in the gray area: his x-rays weren’t conclusive one way or the other. Dr. Mehta was the third doctor to tell us she wasn’t 100% sure whether Jake had progressive scoliosis or resolving scoliosis. We felt very discouraged. We were hoping someone could definitively tell us the right path to take. Instead, what we learned is that Jake, his back, and his x-rays refused to be “put in a slot.” We learned that every case of scoliosis is unique to the child.

So the doctors put the decision in our hands. Did we want to continue bracing, or did we want to start casting? We agonized over what to do and weighed the pros and cons of each. Our doctor told us that, yes, the brace was working. But would it continue to do so? He assured us he could control the scoliosis and address the rotation better with a cast. Our greatest fear was to miss the precious window of rapid growth during the first two years of life, and Jake was already 15 months old. This fear, coupled with our doctors confidence, led us down the early treatment casting route. We are happy to say that we have not once regretted our decision. We could not believe how quickly Jake adjusted to his cast–he was his normal, happy, energetic self within days!

Our doctor was impressed with Jake’s progress after just one cast. Jake went from 28° before the cast to 8° out-Jake 2005 crop2of-cast. This was definitely a testament to early treatment:  help the children while they’re young, before their curve(s) grow too large and become impossible to control. Our son is proof positive. After only two subsequent casts, he is now in a modified TLSO brace fashioned after the EDF (elongation, derotation, flexion) casting technique. Out-of-brace he is at 10° and 6° with zero rotation. (His curves keep changing and moving; he now has two curves again.) In-brace he is around 2° and 6°. Jake will soon be two years old; his period of rapid growth is nearly over. We cannot express how fortunate we feel to have seized the opportunity to use this growth when we had the chance.

We’re not sure how long Jake will be in his brace, but we hope and pray it will help keep him where he’s at. We will make an appointment soon for an echocardiogram. His geneticist has ruled that he has some sort of mild Jake 2005 crop1connective tissue disorder, and she is running tests to confirm which one. We believe (as do other parents on the support group) that scoliosis cannot be idiopathic. Something has to cause it. In Jake’s situation, was it his connective tissue disorder? Was it intrauterine molding? Was it postural? Or a combination of all three? More research needs to be done. Maybe if we learn the answers, we can learn how to stop further progression. Meanwhile, early treatment with serial corrective plaster casting will continue to be a necessary and superior corrective solution for infantile scoliosis.

The past 20 months seemed to have moved in slow motion on a road that was sometimes bumpy, but the journey has been rich with blessings. We will forever be indebted to ISOP, the organization that helped to educate us and champions for all our kids tirelessly, to Dr. Mehta for bringing her care and early treatment expertise to this country, to the compassionate team at Shriners Hospital in Erie for always doing whatever it takes, and to Jake’s orthopaedic surgeon, who “straightened out” our little boy and is just as excited about it as we are!

Thank you for reading Jake’s story. If you have any questions about his journey, please contact me at jviv314@yahoo.com.

Sincerely,

Jennifer

Jake’s mom

Update on Jake March 2008

Jake only wore his brace for three months before growing out of it in September of 2006. We’ve had x-rays approximately every six months.  His most recent x-ray in February 2008 was taken after nearly a year and a half since we stopped treatment.  He has a 3.8 degree curve with minimal rotation.  Our Ortho is happy with this progress as Jake (now 3 1/2 years old) has grown at a phenomenal pace of almost 6 inches in the past year!  Our course of action now is to continue to monitor his spine frequently; his next x-ray is scheduled for one year.

 

Jake’s Story – From Crooked to Cured

Seattle, WA – Our son Jake was about three months old when an X-ray revealed he had a 22-degree curve of his spine. We saw an orthopedist, who ordered an MRI and a CAT scan to be done under anesthesia. All results were negative and we were told to wait and see if the curve would resolve on its own. It didn’t. We went in for a second X-ray when he was nine months old, and his curve had already progressed to 45-degrees. His orthopedist recommended that we put him in a brace that very day and sent us to the orthotist (brace specialist). They measured him right then for the brace, as he screamed and cried. While this was happening, I asked how many infant braces this team had done? The answer was, “once.” That moment changed my life. My instinct told me we were at the wrong place for my son.

My husband and I did some research and found ISOP (the Infantile Scoliosis Outreach Program), and through them, found facilities that practiced the proven, Early Treatment Mehta Casting Method. I called Shriner’s Hospital in Portland, OR the next day and booked our appointment.

I then called Children’s in Seattle and cancelled the brace that was being made for Jake, confident that we had finally found the solution we had been praying for. We are so grateful to ISOP and its Founder, Heather, for all the advice and help throughout this process.
We arrived at Shriner’s in Portland anxious to get the casting underway; he was 14 months old and had just begun to walk. We were treated so wonderfully at Shriner’s and are forever grateful for the opportunity to have the early treatment performed. The nurses and doctor were so amazing and his casting went beautifully.

By the end of the first day he was walking around and by day-two, he was bending over to pick things up – no problem! It was incredible to watch our resilient and brave little boy, as he was learning how to walk and sit up all over again. Jake went from 50 degrees to 15 degrees in his first cast, which was amazing!

During our last visit to Shriner’s in Portland, his doctor called while Jake was under anesthesia to tell us that Jake’s curve was at 0 degrees! We were shocked and pleased as his doctor advised us to have him molded for his temporary, follow-up brace. He has been in a thin fiberglass brace – similar to the look of his casts – for 81/2 weeks now.

Every family with a child suffering progressive infantile scoliosis has its own story and journey to share. Most are not so happy. For the lucky among us, there is ISOP and Dr. Min Mehta; the hope they inspire; and the early intervention that allows our kids to lead happy, healthy active lives.

Sonja and Shane, Seattle, WA

Life With Casts: “Flossing” to Maintain Skin Integrity

Maintaining skin integrity while your child is in a cast will keep them comfortable and reduce the risk of skin problems and irritations.
The “Flossing” process is recommended for children in casts as an effective way to slough off dead skin and prevent potential skin issues. The material used to floss is a basic pair of nylons and is recommended for children with no skin issues.

Watch a Video of River’s Mom performing the Flossing Technique

THANK YOU Mommy!

Cole’s Story

Cole was born at 36 weeks gestation as a healthy and happy 4.5 lb. baby on March 9, 2005.  He has a fraternal twin brother named Jack who does not have any signs or symptoms of infantile scoliosis. At around 4 months of age, we noticed that Cole’s chest wall seemed to protrude quite a bit. We didn’t think too much of it, but at his 6 month pediatrition check up we pointed it out to the doctor. She turned him on his stomach, and we then noticed a few small folds on the right side of his back. She immediately referred us to a pediatric orthopedic surgeon who specializes in scoliosis.

We were able to see him at Cole’s 7 month birthday. An x-ray was taken which revealed a 48 degree left thoracic curve with the RVAD estimated around 52 degrees. The next step was the MRI to rule out any congenital issues. Cole was officially diagnosed with idiopathic infantile scoliosis. The orthopedic surgeon said to come back in 3 months to see if it was a progressive curve and that we would most likely be facing years of bracing, surgeries, and eventual spinal fusion. We were devastated.

We were not satisfied with waiting 3 months, and we turned to the internet for more answers and information. We just new there had to be something less invasive than surgeries and wanted to seek help sooner than 3 months.

Within a few days of Cole’s diagnosis we began reading about early treatment and found a contact number for ISOP. A few weeks later, ISOP invited us to the second Early Teatment Trial Project at Shriner’s Children’s Hospital in Erie, Pa.  The timing, location, and treatment was amazing. We felt so blessed and jumped on the chance to have a less invasive, simpler, and less time consuming option for Cole and his future.

At the time Cole was the youngest baby to have ever participated in the ETTP with Dr. Mehta. He was 8 months old when his first cast was applied. The results of his treatment are as follows:

November 10, 2005 (1st cast):COLE_beforeandafter
-Before cast: 48 degrees
-In Cast:  28 degrees
-RVAD in Cast: 34 degrees

January 19, 2006 (2nd cast):
-In cast: 15 degrees
-RVAD: unknown

March 29, 2006 (3rd cast):
-In Cast: 14 degrees
-RVAD: 28 degrees

May 24, 2006 (4th cast):
-In Cast: 10 degrees
-RVAD: 23 degress

July 11, 2006 (5th Cast):
-Incast: 8 degrees
-RVAD: 9 degrees

Cole is now 17 months old and in his 5th cast. He is walking, climbing, talking, and keeping up with his twin Jack. The casts have not held him back at all. We are told that Cole will have 1-2 more casts, and then the bracing process will begin for 6-12 months. By the time he is 2 1/2, we hope to be done with the majority of his treatment. And the best part is we have avoided surgeries, growing rods, and spinal fusions.

Thanks so much to Dr. Mehta and her dedication to these small children. Thanks to ISOP who has dedicated so much time and effort in educating parents and doctors on the benefits of early treatment for progressive infantile scoliosis, and thanks to Cole’s doctor, at Shriner’s Children’s Hospital, Erie, Pa., for learning about early treatment and helping Cole be a happy, healthy scoliosis free kid.

If you have any questions, please feel free to contact me at: michelle_r_baird@yahoo.com

Sincerely,

Cole, Michelle and Matthew

Run Straight to the Finish 5K – Fayetteville, NC – June, 2013

After torrential rains in Fayetteville, NC, early Saturday morning the clouds parted and the perfect day for a 5K run unfolded.  At Honeycutt Park, it was a run Straight to the Finish in support of the work of the Infantile Scoliosis Outreach Program (ISOP), a program of Ability Connection Colorado.

50 runners preregistered online and day-of registration began at 7AM to welcome an additional 7 participants (weather reports may have scared some folks away).  All registered runners and 1 Mile walkers received a beautiful green ISOP t-shirt and a sincere thank you from 5K race Founding Mother Rachel Jacobs who was busily preparing the site for the event.  Rachel’s young daughter Ella has a spine growing straight thanks to ISOP and Mehta Casting!  And this race is her way of giving back to ISOP and Heather Hyatt Montoya for providing life-changing resources for the Jacobs family.

Diamond Dust, Cape Fear Music, ISOP
Diamond Dust played courtesy of the Cape Fear Music Center

 

There’s nothing like an early morning concert to set the tone for a great race!  Diamond Dust, an all-girl, all-teenager band from the Cape Fear Music Center was on hand to entertain the racers as they geared up to run.  Playing their version of rock classics from Heart to Joan Jett, it’s safe to say that these ladies earned some new fans and got our athletes pumped up.

 

 

And they're off with RachelAt  8:30AM the whistle blew and the runners were off on a beautiful 5K (3.1 mile) course that wound through the beautiful and quiet neighborhoods behind Honeycutt Park.  The first runner finished in just 18 minutes and remarked “Wow – what a great course!  If you do this again next year, I’ll be here.”  With that he handed the ISOP t-shirt to his 7 year old daughter/biggest fan and they headed out to enjoy the rest of their day.

 

Oden
Oden , the youngest finisher of the 5K is congratulated by Sweet Frogs

 

All the racers finished in good time and great spirits. Two large Sweet Frogs greeted finishers with water and energy bars to replenish their efforts as well as Sweet Frog coupons.

First-time 5K racer Carmen traveled over an hour to Fayetteville for the race and was beaming as she crossed the finish line.  Oden was our youngest racer at 3 months (pictured below celebrating with the Sweet Frogs!) and longtime runner Gregg was our most mature participant at 74 years young.

The proceeds from the Inaugural 5K Race Straight to the Finish will allow ISOP to continue training physicians through hands-on tutorials in Mehta’s Growth Guidance Casting — the only noninvasive cure for progressive infantile scoliosis.

Thank you to The Jacobs Family and darling Ella for your compassion and drive.

Brooke’s Story

Brooke was born on July 7th, 2001.  At 4 months old , intuition told me something was not quite right.

At 6 months old, I noticed that her back was curved slightly.  My father and her father both agreed.

I called the pediatrician and was seen the next day.  At the appointment, we asked about scoliosis.  We were told no, but to ease our minds an x-ray was taken.  They called later that day to say that Brooke indeed, had scoliosis.  At the time her curve was measured at 27 degrees low thoracic, and 20 lumbar.

We were told then to see a specialist. We did, at our local Children’s Hospital.  This hospital insisted on doing more x-rays of their own. These films were unnecessary, and revealed the same measurements as before.

The doc looked at her back, and suggested that we return for a follow up in 5 months.  That seemed unreasonable, but at that time I didn’t know too much about scoliosis..

Within a couple months it was obvious to us, that the curves were progressing.

I called to set up an earlier appointment.  She was 9 months old, and not able to completely sit up unassisted.

Another doctor in this hospital ruled out congenital abnormalities, after an x-ray was taken of her head and neck area.  No structural abnormalities were found.

More x-rays revealed that Brooke’s curve had progressed to 37 degree low thoracic and 30 degree lumbar, in a couple months.  At this time they suggested we get a brace.  We could get one at the hospital which was 2 hrs away, or we could contact our local orthotist.  We chose the latter, which was also a mistake.  They insisted on more x-rays.

The 2nd doctor from our local children’s hospital never recommended a follow up appointment to make sure brace was adequate.

She was placed in her first brace close to her first birthday. They were neglectful on directions, care and tightness of this TLSO Brace.

The brace was not adequate, and they felt that it was not holding her.  It was taken to numerous places for adjustments, but never fit well.  It was worn  23 hrs a day.

This is when my research began.  I joined numerous internet support groups, in effort to learn more.

I told Brooke’s Story and was contacted by Heather.  We talked about the ineffectiveness  of bracing these small infants/children.  Heather  recommended casting as a way to maintain Brooke’s curve.

We had Brooke in physical therapy at the time because she still could not sit or stand unassisted.  I showed our physical therapist’s Brooke’s x-rays, and they suggested we look into a scoliosis clinic in the same hospital  The doctor  there suggested an x-ray of Brooke in her brace to make sure it was holding her, and it wasn’t..  She was then measured without the brace and this revealed that her true curves were 55 degrees low thoracic, and 45 lumbar.

I knew as a mother that I needed to act fast.  I wanted another opinion, so I made yet another appt at another reputable children’s hospital in Pittsburgh, PA.  This doc took more x-rays with and without the brace.  He felt that I was not putting the brace on tight enough, so he tightened the brace and measured her at 25 degrees.  He also stated that he was not impressed with this particular brace.  He said that her scoliosis would progress with her growth, and that we should just “wait and see.”

In Jan 2002, we had an appt with the Shriners in PA.  They made a new brace for her in 2 weeks.  They also predicted cast’s,  and a halo in her future before surgery in effort to maintain her curves and prolong surgery for as long as we could.

A follow up appt with the Shriners in Erie PA. was made in a month.  The doc thought the brace was effective, and wanted to see Brooke again in 3 months.

Before her next appt., I was contacted again by Heather.  She informed me of her recent connection with Dr. Mehta.  She sent me the video, “A New Direction.”

Upon watching the video, I knew that I needed to give serial corrective plaster casts some consideration.  No one had ever given us any hope before.  WAS THIS FOR REAL?

I immediately presented the video to her doctors at the Shriners.  Her doctor watched it and called me back.  He said that he was fond of Dr. Mehta’s work, and that he was willing to put a  plaster cast on Brooke, if that’s what we desired!

Although, at our next appt. her curves were measured 10 degrees lower.  We were so happy!   We just knew her curves were going to get better at that point.  We were given a little hope, and we ran with it.  But, in the back of my mind, the video continued to replay.

Meanwhile, Tawney, (Tyler’s Mom) called to inform me of his wonderful progress in his first cast..

I was excited for her, but was also confident that Brooke was getting better, so why torture her during the summer in a cast?  Not to mention, she was in aquatic therapy and loving it.. I knew it was benefiting her at the time, and her doctor agreed.

An appt was made in 6 months, but that was not soon enough.  The brace wasn’t fitting well, and we needed another approach..  We were seen again in 4 months, and it was decided that the brace was not holding.

I knew then that it was time for a cast.  Her doctor agreed, and Brooke’s first plaster cast was applied 2 weeks later, at age 2yrs and 4 months old.

We were admitted to the hospital on November 4, 2003, the night before her first cast was applied.  She was measured at a 47 low thoracic, and 43 lumbar.  .In the cast, she was measured at 17 degree low thoracic, and 5 degree lumbar.

We went home that evening.  We were so exhausted.

Unfortunately, Brooke was reacting to anesthesia, and then developed bronchial asthma. Needless to say, the first 2 weeks were quite difficult..  Although, we knew most of her discomfort was due to the asthma.

Within a couple weeks she had completely adjusted to her new cast.

Our follow up appt. was one month later, and the standing x-ray revealed that she had settled to 25 degrees, in the cast.

We had to schedule an earlier appt, because she had grown so much in a couple months.  The cast was sawn off, and her 2nd cast was applied.  Her doctor was able to get her down to 12 degrees in this new cast!

She adjusted to this new cast even quicker than the last.

We are now scheduled to go back at the end of March.

I would like to give special thanks to Dr. Min Mehta for dedicating her life’s work to the treatment of our children.

I would like to thank Dr. James Sanders for applying the casts when no one else would.

0868582-r1-040-18a

I would like to thank Heather Hyatt and The Infantile Scoliosis Outreach Program for giving me the educational material I needed to make the best choices for my daughter Brooke.

My daughter’s curve correction would not have been possible without the dedication of these people, and for that I am eternally grateful.

Thank you for reading our story, and feel free to contact me with any questions regarding Brooke’s care.

I’ll keep you all posted.

Sincerely,
Bridgette

Olivia’s Story

Olivia’s Story

After two years of extensive research, I was finally able to locate the only person on the planet willing and able to help my child. Unfortunately, he lives in France. Luckily, I made contact with him before he retired in June 2000. His recommendation was for a procedure considered experimental, and not commonly practiced in the U.S. It consists of halo traction, a specialized, two-piece, adjustable plaster cast with turnbuckles, and Bi-Pap breathing exercises. The combination procedure was performed on October 2, 2000 on 2 ½ year old Olivia & 3 1/2 yr old Breann at the Shriners Hospital in Salt Lake City, Utah.

This traction therapy/experimental procedure took three months. So far, we are extremely happy with the results. Olivia entered the hospital with a 96º thoracic curve. One month later, the curve was at 45º. The goal now is to maintain the curve, she is currently in a  plastic brace with neck support. it’s a lot of hardware, but it allows removal once a day for the skin to breathe, and the alternative exercises we’ve chosen to stretch & straighten her spine, i.e. inversion table, hanging rigs, pilates, yoga and more. Details on these and other disciplines will follow, but it’s important to note now that they strengthen muscles that are not used while in a Risser Cast the other 9-11 months of the year. My research indicates Olivia’s curve will revert back to 96º within 1 ½ -3 years if alternative solutions are not found. Bracing without neck support has proven to be of no significant benefit for this type (thoracic) infantile scoliosis and certainly not at Olivia’s age.

tlso garachoia_brace

 

Chronological History

Following Olivia’s birth, an intern who examined her heard a clicking in her left hip and asked seven other doctors to examine her. They all concurred there was nothing wrong with her hip and refused my request to give her an x-ray. They stated they don’t expose newborns to unnecessary radiation. Five months later, while giving Olivia a back massage, I noticed that the left side of her back seemed to be a little more muscular than the right. I immediately took her back to the hospital where she was delivered. They intimated that she was lazy and only wanted to use one side of her body, therefore, we should move all activities to the opposite side of the room to make her use those other muscles. This was tried for a few wasted hours. She had always used both sides of her body and I didn’t believe the diagnosis. Instead, I took her to Children’s Hospital in Denver where they took x-rays and immediately diagnosed Infantile Scoliosis. At this time her thoracic curve was measured at 39º.

At my insistence, an x-ray was taken of her hips and it was determined her left hip had been subluxed since birth thus favoring (but still using) the one side. Her hip was reset and she was placed in a spica cast for one month.

This was followed by a hip brace for three months (while the spine continued to curve), but I was told the hip must be aligned first, then the TLSO brace worn in order to attempt correction or at least maintenance of the spine. She was then fit for a TLSO brace that was unsuccessful in maintaining her curve. This meant continued deterioration and ultimate fusion of her spine before her torso would be fully-grown. It meant certain lifelong deformity with severe respiratory problems.

Frustrated with the doctor’s inaction to stop this progressive curvature of the spine, my research on Infantile Scoliosis began. I took Olivia to at least 20 Orthopedic doctors who’s specialty was Scoliosis in our state (Colorado). All of them agreed with the diagnosis and treatment except for one doctor who said that Olivia needed serial corrective plaster casts. She indicated that this treatment probably wouldn’t be available to us in the U.S. because doctors here consider this practice archaic and ineffective.

olivia_hat

I began sending Olivia’s x-rays to most major Children’s Hospitals in the U.S.
I then began sending them abroad to France, England, Scotland and Holland. I either received no response from the U.S. doctors or their response was to advise me to keep Olivia in the TLSO brace and “hope for the best.” All the doctors abroad agreed that bracing without neck support has not been shown to be of significant benefit for this type (thoracic) infantile scoliosis, and certainly not for a child Olivia’s age.

I presented this information to all of her Colorado doctors and they insisted that serial corrective plaster casts were ineffective, barbaric and an archaic practice. I then made the decision to raise money to live in France where I knew of a doctor who could help us. I was determined to speak to him personally. Fortunately, I was able to obtain his home address and immediately began sending the x-rays and medical information to him. He called me at home and once again confirmed that Olivia needed serial corrective plaster casts with neck support. Again, her Colorado doctors didn’t agree with this recommendation.

Olivia’s Colorado doctor at this time was planning a trip to France for a spinal convention and was able to confer with this French doctor about the right course of treatment. Upon his return, his mind was changed.

I then re-contacted a doctor at the Shriners Hospital in Salt Lake City with whom I had been corresponding all along. He informed me that this French doctor would be in Salt Lake City in June 2000 before he retired and that he would try to set up an appointment for Olivia. We met him at Shriners where he examined her and conferred with the doctors at Shriners, who agreed to treat her, per his recommendations.

The other recipient of this procedure, also a Coloradoan, 3 1/2 year old Breann, curve has improvement from 69 degrees to 28 degrees.

The above successful results occurred because Dr. Jacques D’Astous was willing and committed to try a therapy not commonly done within the U.S. There ARE alternative solutions besides fusion for this type of scoliosis in the U.S., and he alone was able to provide one. We are eternally grateful and indebted.

October 2003 Update
I am sorry for not having updated this site sooner.
Much has happened since the last update. Like my introduction to orthopaedic spinal surgeon, Dr. Min Mehta.

Through my relationship with the Scoliosis Association in the United Kingdom, ( S.A.U.K.), I was introduced to Dr. Mehta who has successfully treated a large number of infants with progressive infantile scoliosis using serial corrective plaster casts.

Dr. Mehta does NOT “wait and see,” how large the curvature is going to increase before applying a cast, but rather applies the cast immediately after completion of necessary exams to confirm the diagnosis of a progressive scoliosis.

This immediate approach to treatment has resulted in successfully straightening the spines of numerous infants and young children. She has followed the progress of her patients for over 10 years, and has found they continue to remain straight.

I have a video produced by Dr. Mehta, her foundation ARISE, U.K. and the parents of children whos spines have been improved or completely corrected.
If you would like a copy of this tape, please contact me at, heather@abilityconnectioncolorado.org/newsite/infantilescoliosis.com. All proceeds go to ARISE, U.K.

The first Infantile Scoliosis Outreach Program ( ISOP), in America is now officially being developed. “My relationship with Ability Connection Colorado now gives ISOP the opportunity to fundraise.  I will keep you aprised of events on a regular basis.”

Thanks for your emotional support in the past, and I look forward to our continued communication through the new list serve, “C.A.S.T.” , (Casts As an Alternative for Scoliosis Treatment), e-mail, and telephone.

Now, for an update on Olivia.

On September 25, 2003 Dr. D’Astous applied her “winter,” cast. She was able to spend the entire summer in a removable brace, which made for a great summer!! She continues aquatic therapy during “cast-off,” time, and exercises everyday.

Her thoracic curve is currently around 67 degrees. A far more livable degree than 96 , which is where the curve was exactly three years ago!!!!!!!

We are all very grateful and happy with her progress, and will continue our research into the future.

Sincerely.

Olivia’s Mom

Olivia’s Update – November, 2006

heather1a

In an effort to maintain her severe curves, Olivia wore casts and braces until she was eight years old. At that time, her doctors determined casting/bracing would no longer be enough help for her tenacious curves, and recommended a more aggressive care plan. Because her largest curve had returned to 100+ degrees, it was determined that halo traction would, once again, be her best option. Olivia was placed into her second halo on January 15, 2006, and was hospitalized for about two months. Her first halo, in 2000, bought her six years of precious growing time, so we were looking forward to the second episode of non-surgical correction she was likely to achieve with the halo. In further support of the halo traction procedure, we had recently discovered and researched a new surgical procedure for which halo placement was a prerequisite. If Olivia was to qualify for this new procedure, the halo would first have to decrease her curves enough to make the procedure viable.

This new procedure, called the dual-hybrid version of the Vertical Expandable Prosthetic Titanium Rib (VEPTR), had only recently been developed by an orthopaedic surgeon in Salt Lake City, UT. The dual-hybrid VEPTR is a surgical procedure that consists of two rods that are made of titanium, are adjustable, and are placed on the outside of the ribcage.  They are attached to a set of top ribs and to the pelvic structure on the iliac crests.

It is intended to be a temporary option, to help Olivia maintain her current degree of 60, until she reaches skeletal maturity. At that time, the devices will be removed prior to her definitive procedure. The hybrid is considered internal splintage, and must be adjusted surgically as the child grows, approximately every six months. We decided to pursue this new option for many reasons.  First, it was recommended by our trusted orthopaedic surgeon. Second, the implanted hardware doesn’t touch the spine directly.

Olivia’s initial implantation surgery took about an hour, and recovery took about a month. It was a very difficult process, but the result was worth every minute of pain! Olivia had grown four inches by the time both procedures were completed.   We had to go shopping for a whole new wardrobe!  In early September 2006, Olivia underwent her first hardware expansion—a minimally invasive procedure from which she recovered quickly.

All in all, we are very pleased with Olivia’s progress. She is living a new life after undergoing these procedures. She attends school full-time, and does everything a typical kid does. She is a really fast runner, and she is in her fourth year of piano lessons. She is in the process of picking out her annual piano recital piece, and will probably choose a song composed by Alicia Keyes (her favorite artist).

Please feel free to e-mail me directly at heather@abilityconnectioncolorado.org/newsite/infantilescoliosis if you have any questions about the halo, the VEPTR hybrid, early treatment, or Olivia’s piano recital!

Sincerely,

Heather

“Madison is now completely corrected” – Jennifer Stewart

My daughter, Madison, was diagnosed with infantile scoliosis at the age of 6 months. All of the initial information I received from her treatment team involved countless surgeries and no promise of real correction. Through the ISOP website I was able to connect with other parents who were experiencing the phenomenal success through a series of EDF jackets. After more research and several conversations with Heather Montoya, I opted to seek this same procedure for my baby.

We began our EDF journey at a Shriner’s Hospital. Madison is now completely corrected. She leads a very active lifestyle participating in gymnastics, ballet, and soccer. She has remained corrected; without further treatment since 2005. Without this innovative procedure, the level of deformity she would surely be at, would not allow her this quality of life. I am eternally grateful to ISOP, Heather, Shriner’s, and Dr. Mehta.

Awarding this grant to ISOP will offer countless other children the same opportunity to experience this same success. Heather’s vision and perseverance to educate the globe in this gentle, effective treatment is unsurpassed. There must be a continuation of education, not only in the simplistic diagnostic approach and awareness campaign to pediatricians across the country, and around the globe, but certainly in the process of early treatment.

Jennifer Stewart

Madison’s Story

Madison was born full term by cesarean section on August 26, 2003. At birth, her pediatrician noticed a click in her left hip. An orthopedist was called in, and she was immediately placed in a Pavlic harness. She wore this removable brace 24/7 for three months. Under no circumstances, we were told, should it be removed. Finally, when she was three months old, I gave Madison her first bath and noticed the hump in her ribs.

I took her back to the same group of orthopedists, who actually specialized in pediatric scoliosis, and was told that there was nothing wrong with her spine.  They suggested that the Pavlic harness had caused Madison to use only the muscles on one side of her body, and that she would need a little time to readjust.  My husband returned from deployment when Madison was seven months old, and he immediately noticed her rib hump. This is when we concurred that there was definitely something wrong.

We took Madison to the pediatrician who examined her back with a scoliometer and immediately concluded that she did, in fact, have some type of scoliosis. X-rays confirmed our suspicions. This was March 23, 2004, and her COBB and RVAD both measured 30°.  He referred us to an orthopedist he knew personally who specialized in infantile scoliosis.  This doctor prescribed a TLSO brace, which Madison wore home that day. In the brace her COBB measured 13°.  One month later, her out-of-brace x-ray revealed her COBB at 48° and RVAD at 50°.  She wore this TLSO brace 23 ½ hours each day; it could be removed only for bathing three times each week.

At this time, the doctor mentioned that he knew of some great work being done for progressive infantile scoliosis at Intermountain Shriners Hospital in Salt Lake City, and this is when my search began.  I spent the entire night on the Internet, and that is when I came acrosswww.abilityconnectioncolorado.org/newsite/infantilescoliosis ,  which has proven to be an invaluable source of information on the early treatment of progressive infantile scoliosis.  ISOP gave us the “A New Direction” video, and I was able to discuss this gentle alternative with other parents who were currently experiencing early treatment with their infants/young children.  Within a couple of weeks, we decided to pursue this uncommon option for Madison.

While we anxiously awaited her evaluation appointment at Shriners, our pediatrician sent us for what seemed to be 1,000 tests. Madison had an MRI of her spine, a slit test with an ophthalmologist, a renal ultrasound, and a genetic appointment to rule out a connective tissue disorder. The renal ultrasound led to radionuclide VCUG.  She was also referred for an echo cardiogram; however she was cast before we could get that appointment.

Madison’s progress was as follows:

26 May, 2004

Before cast application: COBB 52°, RVAD 40°

After cast application:  COBB 21°, RVAD 20°

*Rotation was significantly reduced

14 July, 2004

After 2nd cast application, COBB 14°, RVAD 2°

13 September, 2004

Before cast x-ray, COBB 25°, RVAD 6°

After 3rd  cast application, COBB 2°, RVAD 6°

At this casting, we noticed that her rotation had increased and a new compensatory curve had developed.

After 4th cast application, COBB 11°

22 Nov, 2004

Before cast application, COBB 17°, with increased rotation

After 5th cast application, COBB 8°, RVAD 1°

9 March, 2005

Before cast application, COBB 16°, RVAD 3°

After 6th cast application, COBB 5°, RVAD 0°

25 May, 2005

Before cast application, COBB 5°, RVAD, 0°

After 7th cast application, COBB 0°, RVAD 0°

(mold for TLSO made while still under anesthesia)

Madison’s final cast was removed on July 27, 2005. Her COBB was 12°.

This x-ray was taken after she had been cast-free for 24 hours. The previous out-of-cast x-rays were taken within 5 minutes of cast removal.

Madison wore the TLSO until January 2006. She began wearing a new brace January 10, 2006. Recent x-rays show her COBB at 4° and RVAD at 0°. We will begin to wean her off the current brace in March 2006, by reducing the time she wears it by two hours each day, each week. Then, she will wear it only while she sleeps for one month. If new x-rays then reveal that Madison is maintaining her correction, the bracing will be discontinued.

Dr. Mehta, Dr. D’Astous, the entire team at Intermountain Shriners, and ISOP will  always have a place in our hearts.  We can’t thank them enough for their dedication to our children with progressive infantile scoliosis.

If you have any questions, please feel free to contact me at:  jenstewart73@yahoo.comn

Sincerely,

Madison & Jennifer

Rylie’s Story

rylie_mdRylie was born January 29, 2006, full term by cesarean section.  She was a healthy 5lb 14oz little girl.  Three weeks after Rylie was born my mother brought to my attention that Rylie kept her head tilted to the left.  I took her to see the pediatrician who confirmed she had Congenital Torticollis and referred her for physical therapy.  At 10 months old the torticollis had resolved, however Rylie still had a very obvious hump on the left side of  her back.  The physical therapist thought it was a muscle, however I myself had progressive adolescent scoliosis and my gut told me it was not muscle.  I scheduled an appointment with a Pediatric Orthopedic doctor at our local children’s hospital.  Rylie was 10 months old at the time of her visit.  The doctor did x rays with her standing and confirmed that she had Infantile Scoliosis with a left thoracic curve measuring 40 degrees.  They recommended we get an MRI to rule out any other anomalies and to confirm it was idiopathic scoliosis.  January 2, 2007 Rylie had the MRI which confirmed it indeed was idiopathic scoliosis.

The doctor informed us this was most likely progressive infantile scoliosis due to the degree of curvature and to come back in four months for a follow up.  They said at that time we can discuss our options for treatment once they get another set of x-rays.  My husband & I were not willing to “wait and see”.  That is when I started my search and found ISOP (Infantile Scoliosis Outreach Program).  As I read all of the success stories I knew this was exactly what we were looking for, a non-invasive method of treatment.

I immediately joined the C.A.S.T. support group.  All members of this group were very helpful as they explained the Early Treatment casting method and the importance of a Mehta trained doctor.  We were put in touch with the Shriners hospital in Erie, Pa.

Rylie was evaluated by a surgeon who had been recently trained on the Mehta Method.  The surgeon confirmed Rylie was a candidate for the Early Treatment Method and applied her 1st plaster jacket on March 8th 2007.  She had an x-ray lying down prior to casting that revealed a 27 degree left thoracic curve with 25 degrees of rotation.  In her first cast she had another x-ray showing a 7 degree curve & 7 degrees of rotation.

The rest of the casting went as follows:

2nd Cast May 3, 2007

Out of cast – 20 degree curve / 0 rotation

In cast –  6 degree curve / 0 rotation

3rd Cast July 11, 2007

Out of cast – 17 degree curve / 0 rotation

4th Cast September 6, 2007

Out of cast – 12 degree curve / 0 rotation

My daughters surgeon anticipates this being Rylie’s last cast.  We are scheduled to return in November 07.  As long as Rylie’s curve has improved to a 10 degree curve, she will be molded for her brace.

We are so pleased with her progress and are forever thankful to the ISOP and the Shriners Hospital Network.  They have completely changed our daughters quality of life.

Please don’t hesitate to e-mail me, should you have any questions regarding my daughters progress with this gentle, effective treatment.

Sincerely,

Kelly, Jason & Rylie

Dylan’s Story

dylanphoto1lgDylan was born in October of 2006.  He was born 3 months premature for unknown reasons.  I had no complications during the pregnancy, but started dilating and having contractions at 25 weeks.  I was put on bed rest for 3 weeks and took terbutaline to try and stop the contractions.  At 28 weeks, the labor could no longer be stopped.  Fortunately, the doctor had given me corticosteroids a couple days prior to his birth which helped develop his lungs quicker and he had a pretty smooth course through the NICU.

He came home after 43 days in the hospital.  We noticed after having him home a few weeks that he held his neck to the right all the time.  We mentioned it to the pediatrician and she explained that it was torticollis (a tight neck muscle).  She recommended physical therapy.  Dylan started seeing a physical therapist in the spring of 2007.  She worked on his torticollis as well as helping him to reach milestones, since he had some mildly low muscle tone which was likely due to his premature birth. He also had plagiocephaly (flat spot on one side of his head).  It is fairly common in preemies and in children with torticollis.

In May of 2007, he received a STAR band helmet to help mold his head and reduce the flat spot.  He wore the helmet for 3 months. In June of 2007, he was just beginning to sit and we noticed that he would slump to the right when he sat.  Somehow this came up in discussion when we were seeing his orthotist for the STAR band.  The orthotist asked if he could hold him a minute and he felt his spine.   He suggested that we get him checked for scoliosis.  We asked our physical therapist about this and she felt pretty confident that his spine was straight, but we still followed up with our pediatrician.  She also thought his spine seemed straight, but ordered the x-ray as a precaution.  Sure enough, the x-ray showed a 16 degree curve.

I immediately started researching infantile scoliosis on the internet and found the Infantile Scoliosis Outreach Program (ISOP).  I learned about RVAD (Rib Vertebral Angle Degree) measurement and how it is an indicator for progression and saw the recommendations for getting a MRI done to rule out congenital issues.   We were referred to a local orthopedic and he gave us the RVAD measurements and suggested a MRI and an echocardiogram.  I also asked about a kidney ultrasound since I had read somewhere that kidney issues could be linked to scoliosis.  He thought that was unlikely, but approved it as well.  Dylan’s RVAD was only 5 degrees, so he recommended just waiting and watching.  This seemed in line with what I had read during my own research, so I felt good about the decision.  However, even though all of his tests came back normal, I noticed that the MRI results indicated a 20 degree curve which concerned me since it had only been a couple weeks since the initial x-ray was taken that showed a 16 degree curve.

I called the local orthopedic and he ordered a second x-ray.  This x-ray confirmed a 21 degree curve.  At that time, the orthopedic recommended a Charleston Bending Brace to be worn at night.   I asked the local orthopedic about Early Treatment with casting and he did not recommend it at that time, but I got the impression he had not had a lot of experience with it.  I decided to be proactive and schedule an appointment with one of the doctors who believed in Early Treatment with the Mehta style of casting for infantile scoliosis.  In the meantime, we went forward with getting the Charleston Bending Brace.

Our first visit with the doctor who had been trained in Dr. Mehta’s method was in October of 2007.  Dylan’s x-ray showed a 31 degree curve and while his RVAD was still below 20 degrees, it too had increased.  At first, the doctor seemed a bit on the fence on whether to cast him or not, but when I showed him the previous x-rays and how rapidly the curve had progressed, he immediately recommending casting him.  Dylan received his first cast the week of Thanksgiving.  It took a couple days to adjust to the cast, but soon he was doing all of his normal activities.  He continued to receive physical therapy and we went about our lives as usual.  He wasn’t able to get in the bathtub or go swimming, but other than that the cast didn’t seem to bother him too much.   He was a little delayed in reaching some milestones such as crawling and walking, but is now on target for all of his gross motor milestones.

Every 8-10 weeks we flew up to Chicago for a new cast.  Out of the first cast his curve was 21 degrees.  Out of the second cast, his curve was 10 degrees.  He recently just had his third cast taken off and he is now down to 0 degrees!!!!  He is now in a TLSO brace to hold the spine in place.  He will wear this brace 20 hours a day for at least the next 6 months.  The plan is to follow up with x-rays every 3 months and if he maintains 0 degrees we can take the brace off in 6 months.

Evan’s Story

Evan was born August 7, 2005, four weeks early, but overall, a wonderfully healthy baby boy. As a mother, I thought that my baby boy was just perfect! I did, however, notice that his ribs did protrude quite a bit on both sides. I attributed this to him being a chunky little boy!  A very dear friend of mine discovered at four months old that Evan displayed some characteristics of scoliosis and we referred this concern to his pediatrician.

We made an appointment at Wake Forest University in the pediatric orthopedic department. While waiting for Evan’s appointment, we noticed a progression in his curvature. He slowly began to lean more to his right side in his car seat and swing. Evan was evaluated in November at WFU and was diagnosed with infantile scoliosis. We had SO many questions and felt unsure of the recommendation- to “wait and see” if Evan’ s curvature would progress. As a mother, I didn’t feel comfortable with the options we had been given and began to research.

After reading ISOP’s website, I was determined that Evan needed to have an MRI done to rule out any abnormalities and we had his MRI on 12/31/05. During this time, I noticed that in addition to his body curving to the side, that he had a hard time with turning his head past the midline. We visited a pediatric neurologist and he was diagnosed with torticollis. I was concerned with the difficulty I saw that Evan had moving his head and neck. His pediatrician agreed that he needed physical therapy to help with the torticollis, which resolved around 13 months. After researching and finding the wealth of information that I did on ISOP’s site, I made and appointment at Duke University for a second opinion.  It was confirmed in January 06 that Evan indeed had infantile scoliosis, and determined that Evan fell into the progressive type of scoliosis. His MRI showed that his scoliosis was not congenital and that there were no structural abnormalities. At the time, Evans curvature(s) measured at 32 degrees and his RVAD mid 40’s. We shared the DVD that I received from ISOP on the effectiveness of early treatment for progressive infantile scoliosis, and were amazed that all the doctors my son had seen, were recommending bracing or surgery.

We decided to take Evan to Shriner’s in Erie, PA. and he  was evaluated in early February. The doctors there agreed that Evan was a candidate for Early Treatment, and on March 14th, Evan was in his first POP (Plaster of Paris) cast. His curvature started out at 46 degrees and his rotation of his ribs was at 64 degrees.  Out of his first cast he was 28 degrees with a RVAD of 38.  His second cast was applied and he was at 19 degrees in this one! Evans 3rd in-cast measurement was 21 degrees, 4th cast -16 degrees, 5th cast-13 degrees, 6th cast- 11 degrees!  What a blessing!  Evans doctors say that as long as his curvature(s) dont progress any, after his seventh cast he will be ready for a brace that will be worn 23 hours per day. He is currently in his seventh cast and will be fitted for a brace in March 2007!

evanbeforeandafter

Brandon and I are so thankful for these wonderful organizations that have given so much, to my son and my family. They have given us hope, where there was little.  The numbers speak for themselves-correction is being achieved for Evan and for many other children across the USA, and abroad. ISOP has given my family and many other families a wealth of information and resources that are invaluable and Shriner’s in Erie, has been a wonderful place to receive Evan’s care. I am in the process of organizing a fundraiser for ISOP and Shriner’s in Spring 07. I want to give back just a part of what was given to us: HOPE.

If your daughter, son, granddaughter, grandson, nephew or niece has a non-resolving case of progressive infantile scoliosis, you have every right to demand the right treatment. Follow the guidelines on ISOP’s website, have all tests done to rule out any abnormalities such as an MRI, order “A New Direction” DVD and arm yourself with all of the knowledge you can. We initially had no hope or anywhere to turn to help our little boy, but thanks to Early Treatment, we had promising options. We had the opportunity to meet Dr. Mehta at the ETTP in Philadelphia, PA in the fall 06, and I felt so very encouraged after her examination of Evan. Thanks to Dr. Mehta’s hard work and dedication, our children are receiving the Early Treatment they need without the need for invasive surgery with such a gentle correction. Evan’s spine has gently been trained to grow straight through the series of 7 casts that he’s had applied. We look forward to the brace in March and time that Evan can enjoy in the bath and pool, but are thankful for the awesome correction we’ve received with the Early Treatment casting process.

Blessings,

Brandon and Jenny

 

Related Story: Read more about Evan and the bluegrass benefit called HopeFest that was held in April, 2007 and organized by Brandon and Jenny. Click here to read the article.

Evan’s Story

EvanB

Our son Evan was born on March 20, 2006.    We could not believe how beautiful he was, and there was no missing his gorgeous eyes.   We really weren’t aware that anything was wrong with his back until his 4-month regular check-up.  His doctor noticed that he had a slight head tilt and wanted to get an x-ray of his neck.  Because he was so small, when they took the x-ray of the neck, they also caught a portion of his spine on the film.   We were told that he had torticollis, which has since resolved through physical therapy, and what appeared to be infantile scoliosis.  This was the beginning of our journey toward a cure.

Evan had an MRI done, and his first visit with a local orthopedic doctor before he was 5 months old.  He was diagnosed with idiopathic infantile scoliosis with a curve around 30 degrees. We were told to wait and see if the curve progressed and continued with regular check ups until he was 10 months old and his curve had progressed to 42 degrees.  I immediately began searching for any information I could find about infantile scoliosis.  This is when I came across ISOP (Infantile Scoliosis Outreach Program) and the C.A.S.T. support group.  Finding this information literally changed my family and more importantly my son’s life.

Evan had his first appointment and casting at the Shriner’s Hospital in Erie, PA when he was 12 months old.  His curve had now progressed to 49 degrees and he had an RVAD of 20 degrees.   He had not taken his first step before the first cast and it only took 2 weeks in the cast and he was walking everywhere.    When they removed the cast after 2 months, his curve was measured at 34 degrees (a 15 degree correction), we were thrilled.   His subsequent castings and corrections are as follows:

COBB 49°, RVAD 20° Before Early Treatment
Cast #1 Date 3/26/07 COBB 34°, RVAD 11° out of cast
Cast #2 Date   5/29/07        COBB 27°, RVAD 2° out of cast
Cast #3 Date   7/26/07        COBB 22°, RVAD 2° out of cast
Cast #4 Date 10/04/07   COBB 16°, RVAD 2° out of cast
Cast #5 Date 12/04/07   COBB 12°, RVAD 2° out of cast
Cast #6 Date   2/25/07   COBB 12°, RVAD 0° out of cast
Brace Date 4/30/07 COBB 15°, RVAD 0° out of brace
Cast #7 Date   6/16/08     COBB 4°, RVAD 0° out of cast
Brace Date 9/21/08   COBB 3°, RVAD 0° out of brace
Currently scheduled to be in his current brace until July 09

Evan’s physician transferred to Strong Memorial Hospital in Rochester, NY in January of 08 and we continued care there in June of 08.  Evan has been in a brace for 6 months now and at our most recent visit we were told that he appears to be cured, but he will continue to wear the brace for another 6 months, to ensure the correction holds.  My whole family is extremely grateful that there are physicians out there who are taking the time to learn about this condition and Early Treatment through EDF casting.    We are so thankful to ISOP, the C.A.S.T. support group, the work of Dr. Mehta and the wonderful staff and doctors at Shriner’s and Strong Memorial Hospitals.  My son most likely will not remember much of being in his casts, but he will forever stand tall because of them.

Finn’s Story

finn

“Strength does not come from physical capacity. It comes from an indominant will.”

Mohandas K. Gandhi (1869-1948)

My son Finn is the very essence of the word strength. He is also determined, witty, and charismatic. For in his three short years he lives his life with the wisdom of an old soul.  He has struggled and he has rallied. His life has not been one of ease but he has blossomed into a thriving, energetic young boy.

Finn was born into my arms on May 31, 2006. I had struggled with Polyhydramnios in my pregnancy that has ballooned my stomach to twice the normal size of a single pregnancy. I went in weekly for the last 6 weeks of my pregnancy for fetal monitoring and at 38 weeks my midwife and physician decided it was time to induce labor.  Finn’s delivery was uncomplicated and very natural. We had not known if he was a boy or girl and were overjoyed when the announcement from my midwife was that he was a boy. My daughter Mia, then almost 4 years old, attended the birth and was the proudest big sister I had ever seen. I did notice that Finn was bruised on one side of his face and that he had some difficulty opening his left eye, also that his left eye sat higher on his face than his right eye. I was told that he was a little shifted from the delivery and once the swelling went down all should be normal. His Apgar at 1minute was an 8 and at 5 minutes was a 9.

Hours into Finn’s arrival his muscle tone decreased and he had difficulty with his breathing. He was grunting and was taken to the nursery for oxygen. After three days in the hospital he was released and we went home to begin our life as a family of four. Within days I noticed that Finn sharply tilted his head to the left with his chin sitting on his right shoulder. His position looked so uncomfortable but it seemed very natural to him and when I repositioned his neck he would again rotate it to the side. The next thing I noticed was that his eyes did not move correctly. Even though he was a newborn he had absolutely no eye focus and stared very blankly never even trying to make eye contact. Even weeks later his left eye still sat higher on his face and his face was very asymmetrical. The left side of his face also drooped with poor muscle tone and without expression. His feedings were extremely difficult and he could not breastfeed well. On top of sucking problems, milk would spew from his nostrils if he was not held in an upright position.

I called into Finn’s pediatrician at 6 weeks of age and told her my concerns of his held tilt and vision. His pediatrician said that the head tilt was torticollis and not uncommon and that the vision problems would resolve as his eyes matured a bit. She said that she would take a look at his 8 week appointment.  By his 8 week appointment my concerns and worry were through the roof. I just knew that Finn was not developing normally. He didn’t sleep, he had great difficulty nursing and I had to feed him pumped breast milk from a bottle, and he surely couldn’t see well. All of my concerns and worries were almost dismissed and one of his pediatricians told me to go home, stretch his neck, feed him from a bottle and not worry about his eyes. I chased after her as she left the room and went into her office. I insisted she write a referral for physical therapy and decided to make my own appointment with an eye doctor.

Finn began physical therapy for his torticollis within a couple of weeks and we went to see a  ophthalmologist when he was around 3 months old. The  ophthalmologist acknowledged immediately that Finn had an eye issue. She was concerned also that his eyes did not seem to abduct out. She was correct. Finn went in for his first MRI at the local children’s hospital. The results did not show any nerve damage or anything else. It was just a mystery. The ophthalmologist sent Finn to a neuro ophthalmologist for a second opinion. The neuro ophthalmologist looked Finn over for about ten minutes and declared he had Moebius Syndrome. Moebius Syndrome is characterized by a complete absence of cranial nerve 6 and 7 movement along this a variety of other symptoms. There is no testing for it. It is just diagnosed with observation of a set of symptoms. I didn’t think Finn had this from day one of his diagnosis and it is clear now that he doesn’t have Mobieus Syndrome because now, Finn has facial movement on the left side of his face. Mobieus Syndrome doesn’t ever get better.  The neuron ophthalmologist then referred us to a pediatric neurologist who recommended repeating the brain MRI to include the brainstem and cervical spine. The MRI showed subtle, possibly abnormal, structural abnormality based on an inverted V-shape of the fourth ventricle but no other abnormal findings.

So, we moved on. I came to the realization that Finn’s greatest issues were not his facial asymmetry or his horizontal gaze palsy or his feeding difficulties. Finn’s greatest issue was the torticollis. The torticollis was being aggressively treated yet we did not seem to be getting anywhere with the treatment. When Finn was about 5 months old I had noticed that when I carried him he felt very shifted to his left side . I asked his pediatrician about it and she stated that it was his muscle development and that he was developing more on his left side. This did not sound correct to me, but what did I know. We moved along and Finn was in vision therapy, speech therapy and physical therapy. He didn’t sit up well, he did not crawl and he screamed at night like I was torturing him. I decided to take him to Shriner’s Hospital in Tampa Florida for another opinion. When his appointment time came, he had learned to do an army crawl and he pulled with one arm and pushed off with his big toe. He was also doing a little better job of sitting.

Finn’s first Shriner’s appointment was when he was 11 months old. Sure enough, he was diagnosed with scoliosis. The findings were: T8 to L4 42 degree levoscoliosis.  The AP and lateral C-spine x-rays showed no obvious bone abnormalities and the AP spine and pelvis x-rays showed a left thoracolumbar curve of 42 degrees. The hips were well contained and the lateral spine x-ray showed no obvious bone abnormalities and no congenital vertebral anomalies. I was terrified. We were referred to a geneticist to put all of the pieces together because Finn did not have all the classic characteristics of Mobieus syndrome. We were advised to watch and wait to see if the scoliosis progressed. I had absolutely no idea what a beast infantile scoliosis could turn in to. I look back at how naïve I was and how unconcerned Finn’s medical providers seem to be. I just had no idea…

Finn had his genetics appointment and there were no additional findings. At about this time we also began to see a chiropractor, because his MRI had ruled out structural abnormalities.  The chiropractor studied Finn up and down. She was determined to make a difference in his life. She worked and worked on his head with cranial sacral therapy to reshape his cranial asymmetry. Little by little we began to see the left side of his face move. Within months of his chiropractic therapy he was smiling a full, normal, toothy smile. He had never been able to move his mouth and face like this and we were so excited and so very hopeful.. I look back on Finn’s first smiles and I think that this was really the first time he had shown some expression of happiness. He had screamed and cried during the night from the time he was born. I knew he was a fighter. His smile told me that he was trying to burst out of his immobile shell.

Finn struggled through the next few months. His head was always going the wrong direction or no direction at all. He was not developing within his normal range and his developmental delays were more noticeable than ever. All of our little friends of the same age were walking, talking and playing but Finn really struggled just to move a few feet. He had trouble rotating his head and that was the only way he could see what was going on around his sides because his eyes did not turn out to look. He could only look forward.  We worked so hard. I gave him a massage every night. I rotated and stretched his head. I walked with him, I talked with him. I loved on him like he was all I ever loved. We attended all of his scheduled therapies. He spent so much time just trying to make his body behave as physically normal as possible that he learned nothing else. He just wanted to move!

At 17 months old we returned to Shriner’s Hospital in Tampa. Finn’s AP of the spine showed a left thoracolumbar curve of 60 degrees. The scoliosis had definitely increased from previous films. The vertebral and intervertebral disk spaces were maintained. The bony structures of the pelvis were normal and the femoral heads were within their perspective acetabula. Shriner’s in Florida recommended a brace. They also discussed with me the possibility of needing a distraction rod in the future.  I asked if there was any other treatments available for infantile scoliosis. I was told that there were none. Bracing and surgery were the only opinions, or do nothing. Finn was molded for a brace and told to return in 4 weeks. We returned for the brace but there was a problem with getting a good fit and giving Finn correction so Orthotics & Prosthetics wanted to do a Risser cast for a brace mold. They did a mold and made the brace, this was another month, and when that brace was made it did not fit correctly either. So, Finn was molded again with a Risser Cast and a brace was made from the cast. Shriner’s was satisfied with this brace and we were sent home and told to return in four months because they wanted to monitor him because they stated that he may require surgical intervention in the future He measured 40 degrees in the brace.

We went home with that brace. He absolutely could not support his body or his neck in the brace. He laid on the floor mostly and refused to try to do anything. I knew this was not going to work. I had done a little research on my own when the braces were being made and they had told me that he would possibly need surgical intervention. I remembered that there was a method of serial casting that was being practiced at some Shriner’s Hospitals but it was not practiced in Tampa. I went back and found that site. Finn will probably thank me for the rest of his life that I did. It changed his life. ISOP (Infantile Scoliosis Outreach Program) was the only brace that mended my son. It began to heal him the minute I joined the group.

Now, just to give you some background on myself. I am natural to the core.  I feed my kids fish oil, pro biotics, and vitamins on a daily basis. They are allowed their share of junk food but eat a natural whole foods diet. My home is as natural as possible and we do not use pesticides or harsh cleaning chemicals.  The idea of putting rods in my baby was very uncomfortable to me. I believe in natural health and homeopathic cures when possible. I was really scared to commit to EDF (Elongation, Derotation, Flexion) serial corrective casting, but it was my son’s best alternative to very invasive, repeated surgeries.  I worried about if the cast would be uncomfortable, I worried about if he would be to hot in the Florida sun, I worried about what I would do if Finn chocked. I worried about how I would bathe him, how would he do being unable to get wet at the beach or pool.  Could he walk in it, could he run in it? Could he just be a little boy in it? Well, I thought about all of this and really looked at my options. He could barely get around as it stood because he was so crippled over with torticollis and low muscle tone. I read and I studied ever story. I  knew that Finn did not have a very good chance to get 100% straight because of his degree of curvature, rotation and his age but I decided we just had to try. I made an appointment with the closest physician that was practicing the Mehta Method. This physician was not part of the Shriner’s network but we decided to give him a try anyway. We went to the appointment and the physician agreed to cast Finn. The next morning Finn went in for casting. About an hour after Finn went into the OR the physician came out and said that he could not cast Finn. He said that I should take him to get growth rods immediately. I was absolutely devastated. I lost all hope. I cried for days. When  I returned home with Finn I posted on the ISOP support group that Finn had been unsuccessful in our casting attempt. I learned that some doctors are  not following the exact recommendations of EDF casting and the Mehta Method. He was modifying the plaster jacket by not using shoulder straps in all cases.  He did have kids with low curves that were achieving correction but this modified method without the support of shoulder straps was not going to work for Finn and his high thoracic curves.  He just had too many neck issues going on and he needed the shoulder straps to hold his shoulder area and chest cavity in place. I was encouraged by another mother on the group to get another opinion. The mother suggested the Shriner’s in Chicago. I gave them a call and sent all of Finn’s medical documentation up to be reviewed. They called and told us to come on up. I was so nervous and excited. We went ASAP.

On our initial visit Finn’s x-rays showed that he had progressed to nearly 90 degrees. It had been less than four months since our last x-rays and the curve was progressing like wildfire now. He could hardly stand at this point. His overall function was almost as bad as it had ever been. He just could not develop like he needed to because all of his energy and focus was on trying to support his body. The attending physician noted that he was very flexible and in traction x rays he looked much better. The physician said he would try to cast him the next day. I was not going to set myself up again for disappointment so I just did not get very excited. The next day Finn was casted. After the casting, his physician came out and told me he “looked good”. Looked good I thought, oh my goodness, could this be true? I was beyond words. I was crying with relief. He was casted down to the mid 30’s.   This was achievable because the doctor treated my child individually, had EDF experience and knew the importance of shoulder straps for curves above T-9.

Finn came out of recovery and we wheeled him down to his room. His cast was taped and trimmed. I picked him up and put him on the ground. He was a little disorientated and a bit uncomfortable and unsure of what had just gone on.  He held his body tall and strong for the first time in his life. He laughed, and he moved, and he tried to walk. I packed him up that afternoon and went back to Florida. With in the next few days Finn became very comfortable with his new accessory. Once he adjusted to the weight of the cast he was full steam ahead. Finn was amazing. The cast allowed him to stand without slumping. He could walk and move freely. He immediately started doing things I had never seen him do. Finn was a new kid. It was the beginning for him. It was the beginning of his new life  where he had an opportunity to learn without pain, where he had the opportunity to be the same as his peers and run with the wind, and where he had the opportunity to focus on something else than just trying to standing up.

Finn has received good correction in his casts. He just went in for number 7. I have never been one for numbers or degrees. I have always known that Finn will most likely never get full correction like some of the younger kids with less severe curves. I choose not to ask what his numbers are. I know he is still above 50 degrees but he is well below 90 degrees. I also know that he gets down to about 28 degrees in his cast. I just really don’t need to know numbers though. I am not focused on that. I am focused on the new chance for life that Early Treatment w/ properly applied EDF casting and the Mehta Method has given my child. I am concerned for his overall development. I want him to develop in all the ways his peers have had the opportunity to develop. I just want Finn to have the chance of a the most normal life possible, one that is free of pain and full of opportunity to grow, develop, and explore in this world that is so full of life.  And you know what??? He is, and the reason he is full of life is because of Mehta casting and the absolute best medical team at the Shriner’s Hospital in Chicago.

Finn continues to achieve success. He just turned three and is doing remarkably well. His vision has improved and he has learned to rotate his head to see what surrounds him. His facial palsy is almost nonexistent. He runs, and he plays and he has the most inspiring, infectious laugh. He is always in trouble for getting into something or climbing on something. He is the pillar of strength and determination. At the end of the day I know that he most likely will require surgical intervention but the casting has given him the opportunity to grow a little more , develop a little more and explore life a little more. I could not ask for anything  more.

Makenna’s Story

MakennaCastMakenna was born on March 27th, 2007 weighing 5 lbs, 3 oz. Although this perfect, beautiful, baby girl was born four weeks early, she passed the newborn tests with flying colors.

At about three months, I noticed that her eyes were not tracking from right to left. We were referred to a pediatric ophthalmologist who ordered an MRI of her brain.

The MRI results indicated a diagnosis of a cranial sixth nerve palsy and strabismus (a condition commonly known as crossed eyes where eyes do not line up in same direction when focusing.) The eye doctor explained that Makenna was only using one eye at a time, but that each eye was actually quite strong by itself.

The eye that she wasn’t using would drift to a crossed position. The strabismus condition was affecting Makenna’s development, and as a result, delayed her ability to walk.

Makenna went in for eye surgery at 19 months. They realigned her eyes by tightening (shortening) the muscles on the inside of her eyes. A few days after the surgery not only did her eyes align nearly perfectly, but she got up and started walking. It was like night and day. It still gets me every time I think about it. It was like a second ‘birth day’. She came alive after that surgery. Before, she had to spend so much energy just trying to focus and make sense of the double vision that she just couldn’t engage in eye contact. Although the strabismus condition was successfully mended, the nerve palsy affecting Makenna’s ability to move her eyes outward, cannot be repaired.

After the eye surgery, we felt like they were in the clear and could breathe a sigh of relief.  But in the summer of 2009, I noticed that Makenna was walking peculiar. Her right foot never quite got in front of the left.  The neurologist ordered a second MRI to rule out any neurological causes of the discrepancy. But before we could get the results, I noticed during a bath that Makenna’s right rib cage was sticking out to the side. I ran my finger along her spine and felt a curve.

X-Rays confirmed that Makenna had a curve in her spine measuring 20 degrees.  Technically, she would be in the “watch and wait” category of scoliosis to determine whether or not it was self-resolving or progressive. However, in Makenna’s case, there is a rare connection between the sixth nerve palsy and the scoliosis called Horizontal Gaze Palsy with Progressive Scoliosis (HGPPS.) Basically, she has brain stem hypoplasia (underdevelopement), creating a cleft or ridge in her brain stem right at the nucleus of the sixth nerve. There are very few cases (about 80) reported in the world. All research indicates that the most troublesome aspect of the condition is the scoliosis. So this is where we turned our attention.

By chance, I met a mom with a 2 ½ year old daughter who had just gone through EDF treatment. This treatment option was never mentioned by Makenna’s doctors. I was directed to the website for Infantile Scoliosis Outreach Program (ISOP). After much internet research and phone calls, it became increasingly apparent that the best method for treating progressive scoliosis in someone as young as Makenna was Early Treatment with EDF (elongation, derotation, and flexion) using the Mehta Method.

I spoke with Heather who guided me on the proper procedure to get Makenna the help she needed. After some paperwork and red tape…we got Makenna into the program at Shriner’s Hospital in Chicago. She received her first cast in November of 2009. Makenna’s curve measured 25° prior to casting and she is currently casted at 0°! Every child with Progressive Infantile Scoliosis should be given the chance that ISOP and Shriner’s has given Makenna! We are eternally grateful.

I want to share Makenna’s story with everyone–not to dwell on all the challenges and frustrations we have encountered, but rather, to reach out to others who may be experiencing similar hurdles with their child. Searching for the best doctors, and the latest research or treatment options is the very best we can offer our children. As parents, we are their best advocates. We should always have faith and keep searching for answers.
To read Makenna’s full story go to: http://www.strengthofspirit.weebly.com
To view a blog featuring Makenna go to: http://thefontenotslife.blogspot.com/2011/01/infantile-scoliosis-makennas-story.html

If you wish to contact Amy Replogle (Makenna’s Mom) her email is sos_2010@comcast.net.

Isabell’s Story

isabell1Isabella was born in April 2006 by c-section. She was full term and weighed 8 pounds  4.5 ounces and was 21 inches long. My pregnancy was what I would call a perfect pregnancy. I had no complications and felt great the whole time. There were also no complications with the delivery.

It was at about 12 weeks of age that we noticed something wasn’t right when we had Isabella in a seated position, she seemed to slouch. Whether she was seated on our lap, her car seat or swing, she had this slouch.  She seemed to lean to the side and in her baptismal picture she looked like the letter “S”. We blamed it on her young age. This continued for the next several months. She did visit her pediatrician regularly. We never missed an appointment or went past due on a visit. He didn’t catch it and neither did we. We thought it was something she would outgrow and be able to better support herself when she got older. I still kick myself for not asking any sooner.
At Isabella’s 12 month pediatrician visit (she had already developed a rib hump on her back) I brought up her “slouch” to her doctor. I wasn’t going to wait and see any longer. He immediately said that she had scoliosis and would need to be referred out to a specialist (orthopaedic surgeon) at a local hospital. Little did we know that at that same time of our referral an EDF Mehta trained doctor had just been hired by that local hospital. When we met our doctor, he didn’t even have business cards yet; he was that new. At the end of our visit he wrote on our x-ray sleeve “www.abilityconnectioncolorado.org/newsite/infantilescoliosis  Heather Hyatt Montoya”.  Isabella was diagnosed at 12 months of age with Idiopathic Progressive Infantile Scoliosis. Her curve was at 51 degrees with severe rotation. The doctor recommended casting and estimated 2-3 years of casting with the worse-case scenario involving surgery at a later point in time.
Isabella has endured over three years of casting. In May 2010, her doctor moved out of state and just like that, California lost it’s only experienced EDF/Mehta trained doctor. We currently travel to Utah for her treatment. We will visit Utah 3 times a year.  Her doctors have been very optimistic and the word “surgery” has not been mentioned since her diagnosis in 2007. We have seen Isabella’s curve and rotation improve drastically. As of September 2010, her curve is at 29 degrees out-of-cast and 19 degrees in-cast.  Remember, she started at 51 degrees with severe rotation. Her progress has always been slow, but steady. I think about the story of the Tortoise and the Hare and its lesson…..slow and steady wins the race. And Isabella will win the race, thanks to Dr. Mehta, EDF trained doctors, and Heather Hyatt Montoya.

Note: Isabella (Izzy) is a happy and otherwise healthy child. She lives life to the fullest and nothing gets in her way, not the cast, and not scoliosis. There are a few no-no’s with casting like no sand and no water but the saying is true, necessity is the mother of invention and we have found ways for her to enjoy the beach and enjoy water play in the summer. She lives a typical life for a 4 year old, but with some life-saving plaster that hugs her torso.

Spotlight On: Teresa

Teresa was born in August 2006 weighing 9lb 8oz, the second largest of her five siblings (who are all boys!). Shortly after birth, she began to have frequent spitting-up episodes and was diagnosed with mild laryngomalacia (partial airway collapse) associated with this reflux. Her pediatrician suggested that we keep her in an upright position and that sleeping in her infant carseat/carrier was a good idea. Teresa slept semi-upright in her infant carseat for all naps and at night, from age 0-9 months. Whenever we would try to take her out of her carseat to sleep, she would sleep horribly and cry a lot, so we would go back to letting her sleep in the carseat. She was actually a great sleeper and a very healthy, happy and content baby. Developmentally, she was “on schedule”. She rolled over (both ways) at age 3 months and sat up unassisted at age 6 months. Instead of crawling, Teresa shuffled on her bottom to get around, which we thought was unique and cute! (We would later question this and now assume it was somehow associated with her scoliosis.)
At age 8 months, I noticed two “bumps” on Teresa’s left front ribcage. When I asked her pediatrician, he said they were probably “just slightly deformed ribs” and he would “watch” them as she grew. At her 9-month check-up, though, I mentioned to him that her back seemed to have a “bump”, too. He looked at her spine and suspected that she had scoliosis of the spine. She was x-rayed later that day while being held in an upright “standing” position (even though she really wasn’t bearing weight on her own yet). We would have to wait a few days to get the results back. I had never noticed a curve in her spine, but when I got home, I saw her sitting up without a shirt on, and I immediately noticed the severe curve. I couldn’t believe it! I was very upset and worried. Believing that the “carseat sleeping” had something to do with her developing this curve, we took her out of the carseat and laid her “flat” for all sleeping.

I immediately began researching “baby scoliosis” on the internet and learned that although infantile scoliosis is very rare, in 80-90 percent of the cases, the curve is 25 degrees or less and self-resolves without any treatment at all. With this information, plus our prayers and faith in the Lord, I was confident that the x-rays would show Teresa’s curve was minor.

A few days later, we found out that her curve was actually 45 degrees, with a 21 degree rotation. I almost didn’t believe the doctor when he told me! He said that 45 degrees is “very significant” and Teresa would need to see a pediatric orthopedic surgeon. I was sort of in shock and I spent the next couple of days going from being fearful to being “at peace”.

I went onto the internet again and did more research on babies with significant scoliosis curves. I learned that 45 degrees indicates that the curve will more than likely not resolve on it’s own, but instead require some form of treatment. Current “conventional” treatment consists of years of plastic braces, followed by surgery to implant metal rods in the child’s back to straighten it. Of course, this was shocking and very frightening for me to imagine.

While researching, I also learned about an Early Treatment Mehta Casting procedure from the Infantile Scoliosis Outreach Program (ISOP) using several corrective plaster casts applied to the torso of the child. The casts gently support the spine in a straight and de-rotated position as the young child grows, possibly removing any need for future surgery. This sounded like a great alternative to us, and Teresa was found to be a good candidate for this procedure. Her first cast was scheduled 2 days after her 1st birthday at a Shriners Hospital.

In the mean time, Teresa had an MRI and neurological exam, which ruled out any congenital deformities and abnormalities. She also had an appointment/x-rays with a local pediatric orthopedic surgeon (as a “second opinion” to the Shriners doctor). These x-rays were taken with her lying down and showed her curve at only 27 degrees. The doctor told us that plastic bracing and future rod surgery was the only option for little Teresa. When I asked him about the serial casting option, he actually hadn’t even heard of it! I was perplexed, as this procedure had been published in medical journals and was showing great success in permanently correcting infantile scoliosis without any invasive surgeries. I learned that because it was a newer form of treatment, and because infantile scoliosis is so rare, many doctors were simply unaware of this treatment. (Thankfully, the positive results over the last few years are beginning to get the attention of more doctors.)

A month later, at her appointment at the Shriners Hospital, she had a 3rd set of x-rays taken (again, laying down). The doctor measured her curve at 21 degrees and said her rotation was “almost 0”. He said her spine appeared to be very flexible and he was “very sure” that her curve would self-resolve without any treatment at all. Her first cast was cancelled and periodic x-rays to monitor the curve were recommended.

Over the next year, 3 x-rays were taken of Teresa’s spine. They all showed her curve to be staying about the same. This put Teresa in a sort of “gray area”, as the curve wasn’t progressing, but it also wasn’t showing signs of resolving, either.

We decided to see another orthopedic surgeon who had recently begun applying the special casts. He took 2 more x-rays, 5 months apart, and determined that her curve and rotation were slowly progressing and would not resolve without some type of treatment. Even though she was almost 3 years old and approaching the end of the “4-year ideal window” for casting, he recommended she start a casting program right away.

Teresa received her first Mehta-style cast a few days after Christmas at 3 years 4 months old. X-rays taken standing up in cast #1 showed her curve reduced to 23 degrees (from 36 degrees) and the spine’s rotation reduced to almost none.

After 2 months in cast #1 and immediately following it’s removal, cast #2 was applied. X-rays showed her curve further reduced to 14 degrees with no rotation (this x-ray was taken in the OR, laying down, in cast).

After 3 months in cast #2, cast #3 was applied and her curve showed further reduction to 10 degrees with no rotation (again, this x-ray was taken in the OR, laying down, in cast).

Teresa stayed in cast #3 for 2 months, at which time she was put into a plastic brace that had been molded in the exact style as the casts. It was actually molded at the same time as cast #3 was applied. The bracing option was suggested as a temporary treatment, which would allow her to remove the brace so she could swim during the hot summer (with her brothers!).

At this time (6 months after cast #3 was removed and she was given the brace) she is, unfortunately, still in this “summer brace”. We are actively seeking having cast #4 applied as soon as possible, as Teresa is now 4 years 5 months old. Unfortunately, the doctor who applied her casts is “between hospital contracts” and unsure when/where/if he will be returning to our local area. Because of this, we have decided, once again, to seek the advice of a “casting doctor” at the Shriners Hospital for Children.

Teresa continues to be a happy, very energetic, and active little girl. Although this journey has at times been difficult, our faith is in the Lord. We know that His ways are not our ways, His plans are not to harm us, He works to bring about what is good, and we can do all things through Christ who strengthens us! God bless you and your little ones.

Pre-casting: Cobb 36 degrees/RVAD 24 degrees (standing)

Cast #1: Cobb 17/Rotation 0 (laying); Cobb 23 (standing)

Cast #2: Cobb 14/Rotation 0 (laying)

Cast #3: Cobb 10/Rotation 0 (laying)

 

Londynn’s Story

Our baby came into the world on January 9, 2009.  She was perfect, a petite little doll.londynn1

From the beginning whenever she was laying down or holding her she always seemed to be curled up in a ball.  We thought that must just be a comfortable position for her after spending the past 9 months in (utero) a little ball in mommy’s tummy.  We shrugged it off.  She was also a baby that spit up alot, which got worse when we started her on formula.  Concerned we took her to the doctor to have her checked out.  Doctor sent us for a GI series – which did not show any gastric abnormalities.  She was diagnosed with reflux and given Reglan and switched to special formula.  After reading all the scary stories on tardive dyskinesia as a possible side effect of Reglan use, we decided to discontinue this medication.  Her spitting up and gas issues continued but we held our own with Mylicon drops and spit up rags.

As she grew, which seemed slower than her older sister, she still seemed to be balled up, and her right shoulder blade began to stick out in back.  We asked her pediatrician about it – but she didn’t seem too concerned.  She checked her hips and leg length and everything seemed symmetrical so she felt everything was fine.  At her 6 month well baby her doctor checked her hips and leg length again.   I appeared to be fine, but to make us feel better an xray of her clavicle was ordered.  The xray of her clavicle came back OK, but what they missed, since they were focusing on the clavicle was the fact that her spine was curved.  How did they miss this?  How could they not have told us?  We returned to the doctor on her next scheduled visit and told her we were still concerned about her back – we showed her again how her right shoulder blade seemed to protrude so she referred us to OU Childrens Hospital in Oklahoma City.

It took 6 weeks to be seen, at which time they took xrays of her spine and informed us that she had a significant curvature of her spine 45*.  They stated that usually if a child has a curve of this magnitude there is an underlying cause, such as tethered cord, or other syndromic conditions.  They scheduled an MRI – another 6 week waiting period.

The doctor called with the results of the MRI and stated that everything appeared normal.  Thank God!  But what about the curve?  He scheduled us to come back in 6 weeks to see if the curve was progressing.  Okay so now we have wasted 18 weeks.  In those 6 weeks I hit the internet looking for treatments, answers, etc.  Some of the stuff I read really scared me.  This is a potentially life shortening, fatal disease, with no cure?  What?

I came across the ISOP website www.abilityconnectioncolorado.org/newsite/infantilescoliosis , and found hope in my despair.  I read everything on the website, I contacted Heather, as I needed to be ready to slam the doctor (be prepared) with all of the questions I needed answers to.  She told me important things to ask, how to have a proper xray taken, etc.  We went to that appointment loaded with a stack of questions.  When I asked him if he knew of Dr. Mehta’s Early Treatment Method of EDF Casting, he mentioned that he had heard of it, and that one of his colleagues had been trained in it, but he didn’t think that was appropriate at the time – come back in 4 months and we will recheck her.  I asked him to give our file to the doctor that had been trained in Dr. Mehta’s Early Treatment Method, and to have him contact us.   Of course he never did.

We were furious when we left that appointment.  We immediately went home and contacted Shriners in Salt Lake City.  They had us fill out an application and fax it to them.  We then bundled up all of her xrays and MRI results and sent it to them with a cover letter and a picture.  We were given a date of January 27, 2010, she would be almost 13 months by this time.  All we could think about was “have we missed the best timeframe for treatment?”.  When we realized that this would only be a consultation and not a casting we called and asked if her xrays and MRI results could be used and could we skip the consultation and go straight to casting.  It was approved and we had a casting date of February 11, 2010.  Unfortunately our baby is/was also prone to allergies and ear infections, and yes she ended up with a full blown ear infection the week before casting.  They would not allow us to get the cast – we would have to reschedule.  We were heartbroken!

We took her to an ENT and we were able to get tubes put in her ears on February 16, 2010.  Our casting was rescheduled for March 11, 2010.  We had only lost a month.  “Time is ticking” is all we had in the back of our heads.  We got our 1st EDF plaster cast (covered w/ 1 layer of pink fiberglass) on March 11, 2010, and we were so excited to finally get started!  We were able to take her back to the hotel that night, but we were so unprepared for the emotional effect it would have on us.  At dinner, she couldn’t sit in a high chair, she couldn’t reach her food, she couldn’t really turn her head very far to the right or left, as the shoulders came up so high.  We cried for what she couldn’t do.  We went back to the hospital the next day – and they made several adjustments to the cast.  They ended up cutting one shoulder completely off (we called it her DIVA cast), lowering the neckline in the back and front, which made it more comfortable for her.  We went home to start our new casting life.

The first couple of weeks were the hardest, she had to gain strength to hold herself up in the cast, she had to relearn her balance, and new ways to do things.  We trained the daycare staff on diapering technique and how to handle her.  Within 3 weeks our life was completely normal.  She did not let the cast slow her down at all.  She can do almost everything that any other child her age can, and being the age she is, she doesn’t know to miss swimming or sand yet.  She did miss her baths though.

We have returned to Salt Lake City 3 times averaging every 8 weeks.  We got our 4th and final cast on September 27, 2010.  During this casting she was molded for a brace.  We will start brace wear on November 23, 2010.  Our astounding results are summed up in a statement by one of our Doctors.  When we asked him about the measurements that they put on the xray that show the degree of curvature on the spine, all he could say was “We couldn’t put any measurement on this one – she is at zero in this cast – she is PERFECTLY STRAIGHT!”

So if you have an infant or toddler with Progressive Infantile Scoliosis, please do not “hope for the best,” or sit and “wait and watch,” for months for it to correct itself, as some doctors may advise.  Please seek a consultation with a doctor trained and practicing Early Treatment with Dr. Mehtas EDF casting.   Our baby, who is now a toddler went from a 40* degree Cobb angle to 0* in 6 months, and her rotation is completely resolved. – This method is proven and it does work!!!!!!!

We are forever indebted to Dr. Mehta, ISOP/Heather – and The Doctors and Staff at Shriners in Salt Lake City.

londynnxrays

londynn2

Marcela’s Story

marcela1Marcela is one of the happiest little girls you’ll ever meet. Since the moment she was born in May of 2008, she was not only the happiest of babies, but also the most serene. Nothing ruffled Marci’s feathers—not even the horrible acid reflux she began battling as soon as we arrived home from the hospital. Our little girl’s reflux was so bad that she would often projectile vomit her entire bottle of milk back at us just seconds after drinking it! For this reason, we began propping Marcela up after her bottles for fear of gagging, and we began putting her to sleep on an incline. We also put her on medication for a little while. With time, however, things got better and the reflux was soon a thing of the past. Aside from that, Marci was a pretty healthy child.
Then one night, when she was about 10 months old, I noticed a “hump” on the left side of Marcela’s back as she bathed. I showed my husband, who thought maybe her muscles were developing differently. We decided not to worry too much about it, but as a couple of weeks went by, I began to get an unsettling feeling that this was more than muscle development. The hump felt hard, and didn’t change when she moved in different ways. I quickly made an appointment with her pediatrician. Once the x-rays were taken, the pediatrician called me over to look at the image–and that’s when I saw the curve. My eyes instantly watered, and I just became speechless. The doctor told me that Marcela had infantile scoliosis. I knew what scoliosis was but I didn’t know what that entailed for a baby. “What does that mean for Marcela?” I managed to utter. “Surgery, and I imagine she’ll never play sports,” was all she could offer me. Needless to say, I was a mess by the end of the visit, but ended up leaving with a referral for a “highly recommended” pediatric orthopedic surgeon.

Well the day arrived for our visit, and my husband and I walked in completely unarmed and uneducated about our daughter’s condition hoping to be enlightened by this highly recommended doctor. What a mistake! After measuring Marcela’s curve at 23 degrees and confirming her IS, he suggested waiting 6 months to a year to “see where this was headed.”  And when we pressed him about alternative treatments, he immediately brought up the subject of rib implants. Feeling hopeless and broken-hearted, we left the appointment in tears. Things didn’t improve when, a week later, a different specialist called Marcela’s curvature “boring” and told us to wait a couple of months to see what it would do.

By then, we had had enough of waiting. That day, we both took to the Internet (my husband from work and I from home). Without knowing it, we both happened upon the ISOP websitewww.abilityconnectioncolorado.org/newsite/infantilescoliosis and began reading the stories of the children with Progressive Infantile Scoliosis (PIS). That day, I can honestly say, was the brightest spot since this ordeal began with our daughter. After reading every single story, I knew that we were in the right place—there was hope for Marcela! I called ISOP directly and spoke with Heather, who sounded like an angel on the other line when she spoke of the gentle yet effective Early Treatment EDF casting w/ the Mehta Method of casting that was being used to CORRECT Progressive Infantile Scoliosis, gently & permanently.  Finally! Here was a way to help our daughter NOW rather than wait for her to get worse.

After speaking with Heather, we got our daughter into Texas Scottish Rite Hospital in Dallas within a month. Marcela received her 1st cast at 13 months old on June 22, 2009 and was casted 2 more times until January 22, 2010, at which time we ended the casting process because we had achievedcorrection.

Casting life was tough, but it was much tougher on us as parents than it was on our little trooper. My husband and I often marvel at how life-changing this all has been—Early Treatment w/ Mehtas Method of EDF casting has literally changed the course of our daughter’s life. I thank GOD for Dr. Mehta, ISOP, for the doctors using Dr. Mehta’s Early Treatment method of casting, and for my mother’s intuition. Currently Marcela is without a cast or brace and is scoliosis-free with no detectable curve!! She is 2 ½ years old now and is as happy as can be to be able to keep up with her older sister. Needless to say, we will monitor her little back frequently until maturity, but we have such high hopes for her future! Whether she decides to play sports or not, the option is hers and her abilities are now limitless.

marcellaxrays

Levi’s Story

Levi was born on February 23rd  at 38 weeks gestation.  He was a perfect 8 lbs. 1 oz. and 21 inches long. Everything about his birth was “normal” however one nurse noted how flexed his feet were.  She said usually you only see that in breach babies, but no worries he will relax.  He was such a wonderful happy baby with a just a few exceptions.  Levi hated being placed on his stomach or “tummy time” as we called it.  He would just scream as if he was in pain.I constantly asked his pediatrician about this at appointments, but was always told “all babies hate being on their stomachs…just keep doing it.”  Consequently Levi was almost sitting up before he ever mastered rolling over (at over 5 mos) because I just couldn’t stand doing that to him very often. Levi also had trouble  nursing on one side with his head positioned in the cradle hold.  He would try and then pull away and scream but would still be hungry and
want to eat. This only happened when held that particular way, never on the other side. When I asked about this the lactation consultant seemed somewhat stumped and simply said then hold him the way he will eat & call back if things don’t get better.  The problem eventually resolved I thought until months later I realized he wasn’t eating on that side at all because the milk was drying up there & he wasn’t gaining weight.  We switched to bottles and formula and moved on.

 

A little before 6 months a popping sound began in Levi’s left shoulder. It was not like popping knuckles, it was periods of intense specifically located popping that happened every time he was picked up for several days at a time & then disappear.  Other family members (one with a nursing
background) noticed the popping also & urged me to ask about it. Whenever I brought this up at Levi’s well baby check ups I was told some kids just pop.  At his 6 month check up his pediatrician did notice what she believed could be abnormal skin folds & ordered a pelvic X ray to further examine his hips.  The X rays came back clear & we were told all was fine with our baby boy.

Developmentally Levi was on track & even ahead in many areas.  He sat up around 6 months & walked just after his first birthday.  Although he has never been very interested in climbing up on things.  There were several times during his early walking days that I would watch him & wonder if his left shoulder was dropped just a bit but couldn’t ever decide if it was an illusion brought about by a wobbly toddler.  I figured he moved around in his diaper for the pediatrician surely if there was something there she would pick up on it I was being overly worried. I felt brushed off on many of my questions, but figured I was just a 1st time mother, what did I know?  I hadn’t gone to medical school like our pediatrician.

Around 14 months Levi had a fall down the stairs.  It was far more traumatic for me then for him I believe, but looking back now I’m thankful for it because of that fall I had been watching Levi very carefully. While giving him a bath one night I noticed a bulge under his right shoulder blade.   Fear washed over me & I just remember screaming for my husband & saying “is that his spine?”  No surely not we decided it had to be an enlarged muscle. After all Levi had already had an X ray & if something as serious as his spine was the issue  surely his pediatrician would have noticed by now!  I massaged it every night & by his 15 month check up it was still there.  It was the last on my list of questions for the pediatrician & Levi had to have been running around the office for at least 20 minutes in only his diaper before we got to it.   That day is burned into my mind, his pediatrician reaching out & poking at the bulge, her face turned white as she finally “saw Levi” not just another patient. She said he’s going to need some X rays & maybe an ultra sound.  The pediatrician called with the X ray results showing a 25 degree spinal curve (lying down).  I asked the most important question I could think of “What does this mean for Levi’s future?”  She said she had never seen it in a child this young & hoped it had been found in time before it became “disfiguring or disabling.”  I broke out into tears.  She offered as comfort that if the X rays hadn’t shown anything the next step would have been to ultra sound the area for a tumor….at least it wasn’t a tumor she said.  I broke. We switched doctors & have never heard from her again.

We were referred to a top notch pediatric orthopedic doctor at the local children’s hospital.  He ordered another set of X rays & evaluated Levi at a 20 degree curve with a 17 RVAD  (standing) & said that he had an 80%chance of being in the resolving group.  We left feeling very positive. We “watched & waited” for about 2 ½ months. During this time we again noticed the popping in Levi’s left shoulder.  At his follow up visit the X rays revealed that Levi’s curve had progressed to somewhere between  29 – 35 degrees with a 25 RVAD.  Levi was given a progressive diagnosis & an MRI was ordered.  The MRI came back clear & our doctor immediately moved on to discussing treatment options with us.  Bracing was thrown out immediately as the doctor didn’t believe it to be very effective  in actually correcting a curve & recommended casting  for this age if we were pursuing treatment at this point.  This doctor was so open & honest with us about his recourses & experience in treating infantile scoliosis.  He was willing to cast Levi in a matter of weeks, but the decision was ultimately ours.  I hold this man in such high regard for answering honestly the most important question I could now think of… “What would you do if this was your son?”  He didn’t speak for awhile and finally said, “ If it were my son I would take him to Dr. D’Astous at Shriner’s SLC. Casting is what he does.”   I now knew this is where we needed to go as my research online had lead me to ISOP & Heather who had given us the same information.

A little over a month later Levi was casted at 20 months of age.  He is now doing fabulous!  X rays pre cast at SLC showed Levi’s curve to be “C” shaped at 31 degrees with 15/20 degrees of rotation & 10 RVAD.  The post cast X rays showed Levi being held at 16/17 degrees with no rotation!  His 2nd cast  had him holding steady at around the same numbers which was the expectation before he was ever casted.  Levi is currently in his 3rd cast & down to about 15 degrees with no rotation in cast.  Currently we are expecting to do one more cast & then try out bracing. We have noticed periods of more popping while in his casts, but the doctors are not concerned about it nor are they sure it is related to his scoliosis…. My “mommy gut” tells me it happens with growth spurts.  His appetite doubled post cast & he actually gained 4 lbs and 1 inch in the nine weeks he wore that first cast.  Levi enjoys running & playing as much as ever. He loves match box cars, going to basketball games, & macaroni and cheese.  Thanks to the amazing team at Shriner’s SLC we are now very optimistic about Levi’s future & look forward to one day putting this behind us.

Side by side compare cast #2

SAMSUNG

Tyler’s Story

Tyler was diagnosed with progressive infantile scoliosis in December of 2002.. His thoracic curve was measured in the high 20’s, and progressed to the high 30’s within a couple of months. We were told to “wait and see,” and that surgery was inevitable ( growth rods, fusion ).tylers_3rd_cast

Our research then began.  We started our research on the internet, and were able to findinfantilescoliosis.com. We were informed of the serial corrective plaster cast method and the need for early treatment.  After multiple attempts trying to find a doctor willing to cast, we were successful!!

Tyler is on his third cast.  The first was applied on March 21, 2003, and his curve read approx. 37 degrees.  Now, in his third cast his curve is measured at 10 degrees.tylers_xray_1
My son Tyler does wonderful in his cast.  He is able to do everything his twin brother does, except swim.

I am scared to think of how high his curve would have progressed had we opted to, “wait – and – see.”  Every doctor we saw agreed that Tyler had a progressive curve that would have NEVER resolved on its own.

Our experience has been a positive one, and we feel lucky to have come across this invaluable information. My son Tyler is proof that serial corrective plaster casts applied early, are far more effective than the “wait and see,” approach to treatment.

Please contact me if you would like to talk about our experience with this superior treatment.

Sincerely,
Tawney
(Tylers mom)

Ian’s Story

Our son Ian was born on August 15, 2004.  He was a full term baby and appeared to be a very healthy baby boy.  Just before his 6 month well-baby check up, he began to sit up on his own.  At that time, I noticed that the “muscles” on one side of his back seemed to be really big and he always leaned to one side, but I just chalked it up to him just learning to sit. When we brought him in to the pediatrician for his 6-month visit, she noticed that something seemed wrong with his back.  She didn’t know what it could be, so she brought in another doctor to look at him.  After they conferred with each other and called an orthopedist, they came back and told us that they thought it might be infantile scoliosis.

In February of 2005, we met with an orthopedist here in Virginia.  They immediately had us take Ian in for x-rays.  They would only let one person in to hold Ian down for the x-ray and I couldn’t get him to lay flat or still during the x-ray at all, but they did manage to get a film taken.  The x-rays confirmed that Ian did indeed have scoliosis.  Those “muscles” that appeared to be big to me actually turned out to be his rib hump.  Ian was diagnosed with a right thoracic curve of 37 degrees.  I was very overwhelmed with everything at this point.  The orthopedist did not show me Ian’s x-rays nor did he tell the degree of his curve.  I had to ask for this information. He prescribed a TLSO brace and requested an MRI be done.  We were in his office all of maybe 5 minutes.  I cried all the way home from that meeting.That night I immediately got on the internet and started researching treatment for infantile scoliosis.  I had a hard time finding much information.  I chatted back and forth with a parent on a message board who mentioned casting as an alternative treatment for infantile scoliosis.  This was how I eventually found I.S.O.P and learned about the success that other parents were seeing in their children who were being casted early.

I immediately called Shriner’s Hospital for Children in Erie, PA and made an appointment for Ian to be seen and evaluated for a cast.  We arrived in April of 2005, and they immediately took x-rays.  This time the x-ray technicians were very careful to make sure that Ian was completely straight and not moving while they took the films.  We were surprised to learn that it appeared as though he was resolving.  His Cobb angle measured 29 degrees and his RVAD was 13 degrees.  At that time, we decided to wait and watch since he seemed to be getting better.  I wish I had known then how important it is too make sure the baby is as straight as possible and not moving for the x-rays.  Had I known that, I would have been sure to tell the doctor that the first films were probably inaccurate.

So, we followed up with x-rays over the summer and he appeared to be staying pretty stable.  He didn’t improve, but he didn’t get worse either.  Then, in October 2005, we had another x-ray taken and learned that Ian was progressing.  His supine x-rays showed a 32 degree Cobb and his standing x-rays showed a Cobb angle of 36 degrees.  I immediately called Shriners in Erie, PA. and they scheduled Ian to be evaluated at the second ETTP (Early Treatment Trial Project) Nov 2005.  Dr. Mehta reviewed the x-rays we brought with us and felt Ian was definitely going to progress due to the amount of rotation he had.  She told me it was the most rotation she had seen in a Cobb angle of 32 to 36 degrees.  Ian was again x-rayed during this conference and in just four short weeks since his films were taken the previous month, he had progressed again.  He was now 43 degrees Cobb, 22 degrees RVAD and he also had 45 degrees of rotation.

Ian was put into his first cast on November 8th, 2005.  In his cast, he was down to 7 degrees.  We were to return in 8 weeks for a second casting.  Ian adapted quickly to his cast.  He did have some difficulty sitting in shopping carts and sitting on the floor, but that became easier within a few weeks.

In January of 2006, Ian returned to Erie for his second cast.  We were pleased to learn that he was now down from 43 degrees to 26 degrees out of his cast!  We continued to have success with his subsequent casts, and he is currently down to 11 degrees out of his cast.  Ian is in his 6th cast now.  He will likely have one or two more casts before he goes in to a brace.

We really couldn’t be happier with his progress and are indebted to both ISOP and Shriners Hospital in Erie, PA., for helping us to understand the importance of early treatment and using growth as a corrective force in treating progressive infantile scoliosis.

Please feel free to contact me at noellesmommy@comcast.net , if you have any questions about Ian’s early treatment experience.

Sincerely,

Jennifer

2008 UPDATE!
After 8 casts and 1 brace Ian is now at 3 degrees, which is no longer considered scoliosis!!

Nathan’s Story

NATHANS HEART

Our beautiful little boy was born on the 3rd of November 2002. He was our first child and he looked absolutely beautiful. The midwives felt Nathan looked blue and was too labored in his breathing. He was taken straight to Princess Margaret Hospital (the children’s’ hospital in Perth) where he was intubated immediately, with wires and tubes coming out of his navel and lines in his arms. To see my baby the next day on a ventilator was horrific. (I had to stay at Osborne Park hospital overnight. It was very upsetting watching all the other mums with their newborns, I yearned for Nathan so much) For days, all the doctors thought Nathan had immature lungs (as he was 5 weeks premature) until the fifth day came and Nathan became increasingly unwell. Without warning, he crashed. He went into heart failure, respiratory distress and total organ failure. To see doctors and nurses clambering around him was more than my husband Brian and I could bear. From that moment, a tight knot of worry and absolute terror lay in my stomach, and unknown to me at the time, wouldn’t leave me for the next 4 months.

Brian and I were guided into a side room by the cardiologist. The first words from his mouth were

“THE NEWS IS NOT GOOD”

We then sat through the worst meeting of lives as we were told Nathan had a major heart condition, which could not be cured. Nathan was diagnosed with HLHS (Hypo plastic left heart syndrome) Basically, Nathan only had half a heart. We were asked to seriously consider compassionate care, which meant we could take Nathan home to die peacefully with his mummy and daddy, or we wait for him to stabilize and travel to Melbourne to the Royal Children’s Hospital. A cardiothoracic surgeon would perform the first of a three staged palliative open heart surgeries. It was called a Norwood and their success with the first operation was at the time 80 percent. However, the children remained so physiologically unstable after the Norwood, the chances of getting to the second open heart (at four months called the BCPS) were at the time around 60 percent.

I remember my world being in shock and looking out of this office down to the world below. Everything seemed so unreal, everything was moving so slow. We told the original doctor we were choosing Melbourne. He told us we needed to wait on some brain scans to check to see if Nathan had brain damage. We got the all clear later on that day and we were ready to go to Melbourne.

We boarded a QANTAS domestic jet on the Sunday. Nathan had a row of seats in first class stripped back so he could travel in style in his humidicrib, along with his doctor and Nurse. We sat six rows back. The first hurdle was the flight itself. As the pressure changed in the plane, so too did the pressures in Nathan’s pumps (for his drugs) which was extremely risky.

We arrived in Melbourne. Nathan traveled behind us in an Ambulance (we were in a taxi) My greatest fear was that I would see the Ambulance turn it’s sirens on and scream past me. I just wanted to be with my little son.

The next four months were very intense. Nathan remained on a ventilator and in ICU for months. His first surgery went well, however, his heart was so fragile that during the surgery, every time his doctor tried to sew his heart, it would tear and bleed. Nathan’s chest remained open for four days to allow the swelling to reduce. Imagine one of the worst days of your life. That intensity and pressure was around us all the time as Nathan was fighting so bravely for his life. Many times we were told he was not going to live. With HLHS, babies can arrest at any time without warning. (In between the first and second stage) In his notes, we found a letter addressed to us saying…We are sorry for the passing of Nathan. Would you consider donating his organs…which we would have done….That’s how close he was to dying.

Nathan was a fighter. He developed a life threatening bowel condition called NEC which meant part of his bowel could be rotting. He suffered from three different dangerous heart arrhythmias, had an external pacemaker to “chase” the rhythms, endured three life threatening blood infections and needed more operations to fix his diaphragm, which was hindering his ability to get off the ventilator.

Eventually, Nathan made it to the BCPS. He stabilized and within two weeks we were back home in Perth with a gorgeous (but blue) baby boy!

For me, as Nathan’s mother, I couldn’t help but wonder what the future held for this little boy. After so many months of living a life or death situation, being unable to control anything in the hospital, and constantly hearing doctors telling me…Just enjoy him while you can, I decided to reclaim my life and happiness. On a sunny day walking with Nathan in the pram, and tears in my eyes, I consciously decided to change what I could control, seeing as I couldn’t change the fact Nathan was on palliative care with a unknown future and lifespan. I needed to believe Nathan was going to live a long and happy life. For him to do that, he needed a happy mummy and daddy. As my attitude towards things changed, so too did my life.

Over the next few years, Nathan and I embraced everything that was thrown at us. He was diagnosed with verbal dyspraxia and learnt sign language, which we both loved. He had physio appointments (because of his heart he has extremely poor muscle tone) he never crawled and walked at the age of two…which is pretty good really) speech, cardiologist, dietician (his heart used so much energy to work, he wasn’t gaining weight. He was put on a high fat diet where McDonald’s and chocolate became the norm) you name it, we did it and loved it all. We didn’t see it as appointments, rather, going to the hospital to play!

THE START OF SCOLIOSIS

One day, as Nathan was standing at the T.V., Brian commented to me that his back wasn’t straight. He was about 12 months old. I looked and could see a slight curve, but couldn’t make out if it was my imagination, or if it was really there. We also noticed a rib protruding so took him off to see his pediatrician at PMH. He told us a lot of babies who have open heart surgery often have a rib protruding and to keep an eye on it. We were later referred to orthopedics who decided to X-ray him. The first x-ray showed a curve of 40 degrees. Nathan was put into a TLSO brace for 16 hours a day and it was decided to “watch and wait” as many scoliosis can resolve themselves.

After two years, Nathan’s curve had progressed to 55-60 degrees. Nathan’s MRI and CT finally revealed the diagnosis. He had SEVERE INFANTILE SCOLIOSIS. We were told to come back in 6 months time with the only real option being surgery. Most research indicated this may have been a good option, but in Nathan’s case, it wasn’t. Surgery on a child with HLHS is extremely risky. So risky our cardiologist wasn’t sure if we should proceed with that option. Where did that leave Nathan? The deformity was getting larger and every time I saw it I shuddered and wondered how it was affecting his cardiopulmonary function.  I couldn’t take it any longer.

I began researching scoliosis. The first website I saw was the SCOLIOSIS ASSOCCIATION OF AUSTRALIA. I read a story about a little girl called Ella, who also had infantile scoliosis and was receiving early treatment with a series of plaster casts. Her curve had reduced by this treatment, something the TLSO bracing had never done for Nathan. I then emailed S.A.O.A. asking for help. I was given two contacts from families who had been in the same situation as Nathan. Both had amazing stories to tell about the success of the early treatment method..

I managed to speak directly to the ARISE Scoliosis Research Trust in Stanmore, U.K., and knew in my heart that a series of plaster jackets was Nathan’s only chance. I was devastated to discover that early treatment with serial plaster casting can CURE infantile scoliosis if the treatment had began before the age of 24 months. Dr. Mehta’s  long study, of which I obtained a copy, proves this. After 2 years of age, the likelihood of surgery is inevitable. Nathan was three and a half. The jackets would however, hold the curve until he was a lot older.

There was only one catch. The treatment was available in London. The decision to go was an easy one, and compared to what we had been through with Nathan before, the stress couldn’t compare. What was hard was coming up with $30,000 to get there. We contacted channel seven, who had covered six stories on Nathan years ago for his heart, who literally knocked on our door 10 minutes later. The public appeal was made the night before we left. We didn’t have the money to go. Brian’s parents were amazing angels and helped us out of a difficult situation.

We landed in London jetlagged but very excited as the first appointment at the Wellington Hospital was the very next day. Everything was set to go. Later on that week, we received a call from the doctor, telling us the anesthetist at the Royal National Hospital in Stanmore would not accept Nathan as a patient due to the severity of his heart condition. Mr. Taylor told us we needed to be transferred to one of his colleagues, at GREAT ORMOND STREET HOSPITAL.

Finally, the day came to have his plaster cast applied. I told Nathan he was so lucky as he was getting a real teenage mutant ninja turtle shell, most kids aren’t so lucky! He was so excited. All the doctors and nurses, even the anesthetist were chatting to him about his new “shell” he was about to get. He was so calm going into theatre. As the anesthetic went in, he went out with the biggest grin on his face. ( This was his 9th anesthetic)

I was called into recovery after an hour and a half. Nathan woke up and began crying. I asked him what was wrong and he said he wanted to watch a video in the toy room. We went straight back to the toy room where he played for hours with his little brother Callum (who’s two) He never saw a hospital bed after the procedure.

At the follow up appointment, the doctor who applied the POP jacket told me Nathan’s curve had gone from 55-60 degrees to 32 degrees. That was just mind blowing for us to hear. We went back to Australia with big grins on our faces. I was a little concerned on the plane ride home, as the pressure from the cast may have affected his heart with the changing pressures, but he was fine!

Nathan has had the “turtle shell” on for one month now. He loves it and refuses to take it off. Isn’t that handy considering he CAN’T!!! He can’t have baths, so instead, each night Nathan and Callum have luxurious foot spas while sitting back in mini recliners. I bring out hot towels and wipe them over as they eat treats and watch a DVD. They haven’t asked for a bath in a month! (Callum gets a shower when Nathan goes out with his dad)  I have bought both boys complete ninja turtle outfits complete with weapon. They think they are the real deal and go around the house doing their little karate moves. It’s hilarious.

Nathan and I need to go back to London every three months for many years. The hardest part of it all will be leaving my little boy Callum who is two and my little girl Emma, who is only 4 months and of course my husband Brian. Still, it could be much much worse. The positive of it all is that Nathan and I will get to see some of the world, which we otherwise wouldn’t have done. I have also discovered that chocolate croissants exist in London and now I cannot live without them!

If I could say one thing about our experience with Nathan is to always be your own advocate and trust in your own instincts. This was the advice I received from Nathan’s cardiologist when I didn’t know which way to turn for Nathan. I decided to go with my gut feeling. As parent, we know what the best thing is for our children, so be confident in that intuition.

I’ve also learnt that no matter what life throws at you, you still deserve to be happy. I won’t allow any external circumstances to affect myself, my partner or my children. Attitude is everything and it can change your whole life. It has certainly changed Nathan’s.

Nick’s Story

Nick was born in Las Vegas in the fall of 2000.  The pregnancy was without incident, until the time of delivery.  My OB had decided Nick was too big, his head was in the right spot, and he was ready to come out.  She (my Dr.) wanted to induce labor, so we showed up at the hospital as scheduled.  Once we got there though, the nurses made no secret of the fact that they disagreed with my OB, who was not present.  They said I wasn’t ready, the baby wasn’t too big, and that I shouldn’t be there.  After waiting all day for something to happen, a nurse came in, checked me and said, the reason Nick wasn’t coming out, was because he was folded in half, trying to come out bottom first.   Another Dr. came in and tried to turn Nick around with his hands, from the outside twice, and from the inside once.  It didn’t work, so I had a c-section.

When Nick was 2 months old I noticed a small curve in his spine.  I showed it to his pediatrician, who said it was Toshiba Digital Cameravery small, and since Nick was a baby, there was nothing to be done.  He also said he thought he heard a murmur, but wasn’t sure enough to pursue it.  He told me not to worry about it.  Since Nick was our first child, and I was a first time Mom, I was relieved to be told “don’t worry about it.”    In addition, I had been diagnosed with scoliosis at the age of 12, and my mother was told not to worry about it.  My Dr. said the curve was slight, and that I should stand up straight from then on, and that was the end of it.  I had no idea that his curve would progress.  I knew nothing about scoliosis, and didn’t think I needed to research it.

Meanwhile, each time Nick had a well baby check, the Dr. was still on the fence about the murmur, and still took the same stance on the scoliosis, although I was convinced it was getting worse.  A few months after Nick turned 1 year old, we moved to California.  I found a new pediatrician, and on his first visit, asked him to look at Nicks’ back and asked if he heard a murmur.  He said he heard the murmur, and also was very concerned about the scoliosis.  He recommended we see a heart specialist first, and then deal with the spine later.  The cardiologist diagnosed Patent Ductus Arteriosis, which has since seemed to resolve itself.  We were told by another cardiologist, that “Nicks’ heart is fine, it just works funny because of the scoliosis.”  It doesn’t sound right, even though it is working right.

Once everyone was comfortable that Nicks’ heart wasn’t in danger, we were referred to an orthopedic surgeon for the scoliosis.  That surgeon immediately contacted Shriners representatives, and got us ready to go to a hospital in our state.  Our first visit to the hospital resulted in the following news being told to us:  the scoliosis is very bad, the only option you have is to schedule growth rod surgery today, and he will have surgery every 3 months until he’s grown.  If you don’t have the surgery, he will end up in a wheelchair, unable to breathe, and eventually die.  This news was completely devastating to our family.  Not having done any research, we had no way of knowing this information was wrong.

After 2 weeks of despair, I decided to refuse to accept that growth rod surgery was the only way.  I spent every waking moment for a month, researching.  I looked for anything and everything about scoliosis, growth rods, braces, syndromes, etc.  I came upon the ISOP site for parents of kids in plaster casts, but was so confused, and thought it sounded too simple, too bizarre too work, so I saved the site, and moved on.  After another month of searching, and finding nothing that gave me any hope, I went back to the CAST Support Group site and dove in.  The more I read, the more I understood.  The more I understood, the better I felt.  All of a sudden, we had a choice!   I gathered as much information as I could and took it with me to our next appointment at the hospital.  The surgeon there refused to discuss casting, refused to watch “A New Direction”, 20 minute video, and insisted I  schedule the surgery.  When I still refused, and said I would need another opinion, he told us to come back in a few months and participate in a conference, where 30 or 40 other Dr.’s would look at Nicks’ case and give us another opinion.  We were thrilled with that, although, when the time came, I was given about 2 minutes to state my case, and we were ushered out the door.  A Dr. came out about 2 hours later and said they all agreed with me that Nicks’ body type wouldn’t tolerate growth rods, and they wanted to put him in a TLSO brace.  I asked him if they would please consider plaster casting, and he said no, they don’t do that there, they aren’t trained for it, and he’d never heard of early treatment for Nicks condition.  At that point I said, thanks for everything, but we’ll be going to Salt Lake City Shriners hospital in 2 months for their opinion, and hopefully from now on.

When we got to Shriners Hospital Intermountain, it was like a whole other planet.  It was like all the months before I was speaking another language and no one understood me, and then, we got to Shriners in Salt Lake City, and everyone understood everything!  Even though we were still scared to death for our son, we felt so relieved.  We felt like we were finally in the right place.  At the hospital in California, I had asked our first surgeon what his thoughts were on Marfans syndrome, thinking that my son exhibited some of the traits, and he told me that I didn’t want to go down that road, and that in the end, the geneticist would tell me the same thing he told me, to go for the surgery.  I mention this because the first day we met the team at Shriners Intermountain, within 20 minutes, one of the Dr.’s asked me if I had had Nick tested for Marfans.

When Nick first started treatment at Shriners Intermountain, in March of 2005, his upper curve was over 65 degrees, his lower curve above 30 degrees, and he had some rotation of the spine.  As of March 2006, his upper curve was reduced by about half, the lower by a few degrees, and the rotation is gone!  Of course having a child in a series of plaster casts isn’t always sunshine and roses, but compared to the alternative, it’s a miracle for us.  Nicks’ quality of life is so much better in a cast than it would have been if he’d had 4 or 5 surgeries with growth rods by now.  I think about where Nick would be, physically and emotionally, if we had listened to that first surgeon, and I feel sick to my stomach.  And then I thank God for finding the ISOP group, and Shriners Intermountain. We have avoided surgery for the time being, and his scoliosis has improved!  I only wish we would have known to address the scoliosis when he was a baby, and to have him treated early with plaster casting then,  I believe his spine would be straight by now, had we known about the early treatment casting process.

 

Join the C.A.S.T Support Group Today!

Connect with other parents who know the miracle of Mehta’s Growth Guidance Casting!

The C.A.S.T. Support Group gives families a way to communicate and connect with others who have young children with scoliosis.  This is a place to share our experiences regarding traditional and alternative treatments, and discuss the pros and cons of each.  This discussion group is hosted by Yahoo Groups.

By joining, you’ll have access to a trove of informative files, photos and resource links for treatment of infantile scoliosis. Best of all, it’s free!  Join Today!

Hopefest – Bluegrass fundraiser for ISOP – 2008

The 2nd Annual  HOPEfest on Oct. 11, 2008 raised more than $14,000 to benefit the Infantile Scoliosis Outreach Program (ISOP) and Grayson-Carroll Shriners.

Jennifer and Brandon Davis, of Galax, organized the event because the couple’s 3-year-old son Evan developed infantile scoliosis at three months of age.

After spending all but three months of his life in casts and braces, Evan is hopefully done.
“He had a series of eight casts and one brace,” said Jennifer. “Now he will have routine check-ups every nine to 12 months until he is fully grown.”

The annual festival featured several musicians, food and a silent auction. While the crowd – estimated at 200 people – was a bit smaller than expected, Jenny said she was pleased with the turnout.

Money raised during last year’s event trained surgeons and technicians from children’s hospitals in Chicago, New York and Sydney, Australia. Money this year is expected to do the same in other locations.

“We don’t know where it will go yet,” Jenny said. “But it will help train more doctors.”
Evan’s infantile scoliosis is a rare condition. In fact, only 1 out of 10,000 children are diagnosed with it.

A condition that usually is associated with teens and adults, scoliosis is a condition where the spine doesn’t grow straight, but curves and twists.

A close friend of the families’ was first to notice Evan displaying some characteristics of scoliosis when he was four months old.

Jenny said she and Brandon referred the concern to his pediatrician and, after being evaluated, Evan was diagnosed with infantile scoliosis.

The most common corrective treatments require surgery and/or bracing. After doing some research, the couple learned about an unconventional, non-surgical procedure through ISOP.
“We shared the scientific evidence that I received from the ISOP on Dr. [Min] Mehta’s early treatment method with many doctors in our area,” Jenny said. “Unfortunately, our local physicians recommended the ‘wait and watch’ approach, followed by bracing and surgery.”
Waiting and watching was not acceptable for the Davises. They chose to look elsewhere for treatment.

The procedure they chose used a series of corrective plaster casts to straighten the spine – similar to what braces do for crooked teeth.

The couple decided to take Evan to Shriners Hospital for Children in Erie, Penn., to be evaluated by a surgeon who had recently been trained by Dr. Mehta on the principles of early treatment and how to properly apply a series of plaster jackets on the appropriate child-sized equipment.
On March 14, 2006, Evan was placed in the first of his series of plaster jackets.
Before treatment began, Evan’s curvature was at 46 degrees and the rotation of his ribs was a severe 64 degrees.

“Our last visit to the doctor in August revealed his curve measured only 10 degrees with minimal to no rotation and now he is brace-free,” Jenny said. “We are eternally grateful to ISOP, Dr. Mehta and the early treatment that [Evan] has received.”

Dr. Mehta, a retired doctor from the Royal National Orthopaedic Hospital in London and Stanmore, England, invented the treatment and, along with ISOP, teaches and encourages U.S. doctors to adopt her technique in correcting infantile scoliosis.

The key to this kind of treatment is early diagnosis and treatment. Children grow rapidly in infancy – but after age two, growth slows. Fitting a child with a cast helps teach the spine to grow straight.
Monique Garcia started a sister organization in Australia after her son was diagnosed with infantile scoliosis – unfortunately it was too late in the progression.

“Evan was a very lucky little boy,” Garcia said during HOPEfest. “I have a little boy… Nathan… he’s only 5-years-old… but he’s dying.”

Garcia said he had a curve on his spine that was detected early, but doctors sat and watched. She now sits and watches as her son’s condition worsens – until it eventually puts too much pressure on his lungs and they collapse.

“This is everything to us,” she told everyone who attended and  helped contribute. “Thank you for understanding how important you are to this cause.”
ISOP was founded by Denver native Heather Hyatt , whose daughter Olivia developed infantile scoliosis shortly after birth.

“It’s dedication like this that has enabled ISOP to train surgeons around the world,” Hyatt said at HOPEfest. “You all are helping make this procedure available to every child that needs it.”
Evan’s father Brandon, a guitarist, was one of the many musicians who performed during the event and said he was eternally grateful to those in attendance.

“When Evan was first diagnosed we were not sure of our options,” he said. “We went to the good Lord and today Evan is okay.”

The Davises plan to hold the event again next year – probably in the spring or early-summer months.

Jenny thanked all the musicians who donated their time, as well as the countless volunteers and the Grayson-Carroll Shriners for all their support.

“We could not have done it without [all the volunteers],” she said.

Ben Bomberger

Grayson Reporter – The Gazette

 

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