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