Ryan’s Story

by mmcnett | Aug 20, 2014 | Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories, Progressive Infantile Scoliosis (PIS),

After 5 years of trying to have a baby, God blessed us with twin boys.  My pregnancy was full of uneasy feelings and lots of “what ifs”.  There were many complications along with 3 months of bed rest.  After the danger point passed, the doctors sent me home.  One week after being home I went into labor.

Ryan and his fraternal twin brother, Matthew, were born in April 2005.  They were born 4 weeks early, both were healthy.  Our boys came home 2 days later.

The boys were about 2-3 weeks old when my mother noticed Ryan’s ribs felt funny.  My mother-in-law had made comments about it as well.  Not knowing anything about Infantile Scoliosis, I thought this was due to them still being small babies.  As Ryan grew, we noticed he always leaned his head to one side.  We now know he had torticollis.  It was never treated and he slowly outgrew it.

While bathing the boys, around 7 months old, I noticed Ryan’s back protruded on one side. I still knew nothing, but wondered often if something was wrong.  At his 9-month check-up, we pointed it out to his pediatrician.  She immediately told us she felt he may have Infantile Scoliosis.  We had heard of teenage girls having scoliosis, but had no idea babies could have scoliosis.  It was a weird feeling not knowing.  She referred us to Texas Scottish Rite Hospital for Children in Dallas, Texas.  Shortly after the pediatrician’s referral, Ryan was diagnosed with Progressive Infantile Scoliosis.  X-rays showed a 29 degree right thoracic curve.  They recommended a CT Scan and MRI to rule out any congenital abnormalities.  They also wanted us to see a geneticist.  We were told they would watch him closely and wanted to see him back in 3 months.  At that time, his doctor also talked in-length about Early Treatment with casting.  We were stunned and confused, but knew we wanted to avoid surgery if at all possible.  If Ryan’s curve continued to progress, casting sounded like the best treatment for him.

In 3 months time, Ryan’s curve had progressed from 29 to 34 degrees.  We then knew casting was what Ryan needed, and it would be in our very near future.  Ryan still, however, needed the MRI.  He and his brother were constantly sick so we had to continuously put this procedure off. Ryan was finally well enough for the MRI and thank God it came back normal.  We saw the geneticist and she felt his scoliosis was mainly “positional” while in untero.  The geneticist did not think there was an underlying syndrome diagnosis.
The procedures were all done and all came back normal, so the date was set for Ryan’s first cast.  He was 15 months old (still a baby), had just started walking and I was SCARED to death.  A cast?!  A hard cast?  No baths, no playing in water.  He is going to stink!  How will he sleep?! He will not be able to do all the things his twin brother will do! My mind was going crazy with all these bad thoughts of a cast.  I needed to talk to someone else who had been through the same thing.
Days before his first cast was applied, I found ISOP on the internet.  How had I missed it all those times I was searching for answers and information?  I was still so scared and had no idea what I might learn, but ISOP had a support group.  I wasted no more time.  I immediately joined the group.

Fast forward to November 2008…………Ryan is now in a brace ONLY at night!!!!!  He was in a series of 6 casts over 14 months.  And wore his brace 23 hours a day for 10 months.  Today his curve is down to 8 degrees and he looks GREAT!!!

Casting was nothing like I thought it would be.  Within a week Ryan was walking again just fine.  His baths?  Well, we came up with other fun bath ideas.  Playing in the water was just a special treat for the boys when his cast was removed the day before the new one was  applied.……..they didn’t miss a thing.  Stinking….we just didn’t have that problem.  And he slept……like a baby, within a week of his first cast.

Ryan adjusted so well to the cast and didn’t miss a beat.  He did everything his twin brother did and more!  Looking back, I only wish I would have known about Early Treatment sooner.  Ryan would have been in casts very early on.  Casting is a gentle method for treating Infantile Scoliosis.  And, for most babies, if treated early and properly, has the ability to train their young spines to grow straight, gently and permanently and surgery is not needed.

We are so informed about Infantile Scoliosis because of ISOP and the CAST support group.  I have learned more here, and through the support group than what any doctor could have told me.  The support group is a God send.  I don’t know how I would have made it through without communicating with other Moms and Dads going through the same thing.

If you are just discovering your baby/child has Infantile Scoliosis, join the group.  It has a wealth of information for you and allows interaction with other parents who are experiencing the same situations.  I cannot thank ISOP and Dr. Mehta enough for all they have done to educate us about Ryan’s condition.

Ryan will go in a few weeks for a check-up and we are in hopes he will be finished with the brace.

Early Treatment with EDF (elongation, derogation, flexion) casting works.

If you have any questions about Ryan’s treatment feel free to email me.   Ryanswalk@yahoo.com

To view a blog dedicated to Ryan and others with infantile scoliosis go Here.

Sincerely,
Brant, Tasha, Ryan and Matthew

Cole’s Story

by mmcnett | Jun 20, 2014 | Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories, Progressive Infantile Scoliosis (PIS),

Cole was born on January 3rd, 2008, 1 hour before his due date, after an uncomplicated pregnancy and delivery.  He received 10’s on his APGAR.  The only funny thing about him was that his foot was bent up so his toes touched his calf. They reassured us that it was just because I was very tiny throughout my pregnancy and he must have been cramped.  Otherwise there didn’t appear to be any problems.

Within a couple days of being home I noticed that his head was slightly misshapen and that he didn’t like to nurse on one side.  His doctor reassured us that it was fine.  We should keep trying to get him to nurse on the side he didn’t like. By 6 months he still did not like to turn his head to that side and the doctor kept telling me to keep trying to encourage him, and that because he could do it there was no reason to worry.  Both the head shape and turning we later found out were related to his progressive infantile scoliosis.

At about 10 months, while bathing Cole, we noticed that he was developing a rib hump on the left size of his back.  I brought it up to the doctor at a his 12 month check up and he didn’t think much of it.  We started to notice a slight curve

in his spine, but only when he sat in certain positions.  I brought it up again acouple months later at a sick visit, and mentioned that I thought it might be scoliosis, because it runs in my family. The doctor said it was too hard to check at this age, and that they wouldn’t treat him until 2 even if that is what it was.  Finally by about 15 months Cole started to stumble when he walked, despite having been walking by 10 months, and started needing to hold his arm out at an odd angle to balance himself.  At this point we became increasingly concerned and started to do some research.  My husband found ISOP and knew immediately that Cole must have Progressive Infantile Scoliosis (PIS) after seeing the pictures of some of the other kids’ backs.  We scheduled another doctor appointment immediately and went in armed with Dr. Mehta’s Growth as a Corrective Force article.  Our doctor reluctantly sent us for x-rays reassuring us that as long as Cole was in a brace by his teens, we would be fine.

We got his x-rays and they came back at 45 degrees standing.  We got a referral to a local orthopedic for the next week and immediately scheduled an appointment at the Golisano Children’s Hospital at Strong Memorial in Rochester to have him seen.  The appointment with the local specialist didn’t go well.  They wanted us to hold him in a Risser cast as long as possible then move on to growth rods until they could fuse his spine.  2 months later, when Cole was 17 months, we were seen in Rochester for Cole’s 1st cast.  His curve had progressed from 45 degrees standing to 47 degrees laying down with an RVAD measured at 25.  The casting went well and they got him down to 23 degrees in cast.

After his casting Cole got his MRI which revealed a small Chiari I malformation in his brain.  At this point it is very small and only needs to be monitored.  Otherwise, Cole is a healthy, happy and very active 2 year old, who has adapted to his cast very well.  He is still the fastest and most active amongst his peers. He loves to show his cast off to everyone and makes sure to tell them how much he loves it.  When he gets a cast break, he asks for it back on.

After 1 year and 5 casts Cole is now able to move into a brace.  He surprised us all, when he jumped from 13 degrees down to 2 within a single cast.  We now get to take him home in his new rainbow brace for a calm 6 months, of summer fun, and no doctors appointments!  We couldn’t be happier with Cole’s progress and are so grateful to Dr. Mehta for her incredible work, Heather and ISOP for connecting us to this treatment which has cured our baby and to our fantastic orthopedic surgeon at Strong for getting us to where we are today!  We can’t even imagine where our life would be today without the combined help of these 3 different people.

Cole’s Numbers:

1. Pre-Casting: 47 degrees laying down
2. 1st Cast: 23 degrees laying down, 50 degrees standing
3. 2nd Cast: 18 degrees laying down, 30 degrees standing
4. 3rd Cast: No x-rays taken
5. 4th Cast: 13 degrees laying down, 15 degrees standing
6. 5th Cast: 2 degrees laying down, 10 degrees standing

Sincerely,
Cole’s Family

Sophia’s Story

by mmcnett | Feb 20, 2014 | Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories, Progressive Infantile Scoliosis (PIS),

Jake’s Story

by mmcnett | Sep 20, 2013 | Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories, Progressive Infantile Scoliosis (PIS),

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-of-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 connective 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

by mmcnett | Aug 20, 2013 | Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories, Progressive Infantile Scoliosis (PIS),

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

Cole’s Story

by mmcnett | Jul 20, 2013 | Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories, Progressive Infantile Scoliosis (PIS),

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):
-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

Brooke’s Story

by mmcnett | May 20, 2013 | Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories, Progressive Infantile Scoliosis (PIS),

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.

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

Madison’s Story

by mmcnett | Jan 20, 2013 | Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories, Progressive Infantile Scoliosis (PIS),

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

by mmcnett | Jan 20, 2013 | Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories, Progressive Infantile Scoliosis (PIS),

Rylie 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

by mmcnett | Dec 20, 2012 | Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories, Progressive Infantile Scoliosis (PIS),

Dylan 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

by mmcnett | Nov 20, 2012 | Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories, Progressive Infantile Scoliosis (PIS),

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!

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

by mmcnett | Oct 20, 2012 | Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories, Progressive Infantile Scoliosis (PIS),

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.

Makenna’s Story

by mmcnett | Jul 20, 2012 | Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories, Progressive Infantile Scoliosis (PIS),

Makenna 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.

Spotlight On: Teresa

by mmcnett | May 12, 2012 | Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories, Progressive Infantile Scoliosis (PIS),

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

by mmcnett | Apr 20, 2012 | Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories, Progressive Infantile Scoliosis (PIS),

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

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 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.

Levi’s Story

by mmcnett | Mar 20, 2012 | Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories, Progressive Infantile Scoliosis (PIS),

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.

Ian’s Story

by mmcnett | Jan 20, 2012 | Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories, Progressive Infantile Scoliosis (PIS),

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

by mmcnett | Dec 20, 2011 | Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories, Progressive Infantile Scoliosis (PIS),

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

by mmcnett | Nov 20, 2011 | Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories, Progressive Infantile Scoliosis (PIS),