by mmcnett | Feb 20, 2014 | Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories, Progressive Infantile Scoliosis (PIS),
Sophia Update
September 28, 2010
Sophia’s spine continues to grow straight and de- rotated. We monitor with X-rays annually, unless we see something that would give us cause for concern and we would then X-ray sooner. After successful EDF/Mehta casting 2007-2008, she wore a Providence Brace 8-10 hrs a night from Aug 2008-May 2009. Then nothing- just on going PT for low muscle tone and lax ligaments and monitoring of spine until “skeletal maturity”. She just turned 4 last week and is a happy, tall, healthy, active girl thanks to ISOP and early intervention!
Original Story:
We were blessed with a beautiful baby girl on September 22, 2006. My husband and I were delighted, as was her 2 year old big brother Samuel. Sophia was a healthy, full term infant. However, despite our best efforts to protect her during cold and flu season, she kept getting pneumonia and was hospitalized for it the first time at 2 months old. She also had recurrent atelectasis, which is the collapse of part of a lung caused by a blockage of the air passages (bronchus or bronchioles) or by pressure on the lung. Hers was mild and just a small pocket of her lung would collapse. She also suffered from mild sleep apnea, severe reflux (GERD) and gastric delay emptying (food/liquid did not move through her stomach like it should and would just sit there, often coming back up when she attempted to consume her next meal hours later). She seemed to have low muscle tone (severe hypotonic we later learned). She was like a jello baby and could not sit up or even be propped up without falling over like a rag doll. When we picked her up under the arms, it was as if she might slide right through our hands. Right before her six month check up, her daycare provider discovered her scoliosis.
That started our long and winding journey to countless doctors beginning with her pediatrician, who then sent us to a neurologist. He then ordered an MRI of her brain and full spine under anesthesia which showed a very small syrinx in her lower spine (a fluid-filled cavity within the spinal cord. We were told that this is something often seen in normal individuals and does not cause scoliosis or need treatment.). We were then sent on a search for a pediatric neurosurgeon. The first neurosurgeon we consulted later pulled in his orthopedic counterpart, who by the grace of God was familiar with Dr. Mehta’s EDF (elongation, derotation, flexion) casting method and early treatment for progressive infantile scoliosis (also the first to provide an actual diagnosis for Sophia’s condition). We knew it was progressive since we had multiple chest x-rays from 2 months old to 6 months old and in hindsight could see the curve forming, plus an RVAD measurement 32 degrees. We were then faced with determining a treatment plan for her. We consulted three well respected pediatric orthopedic surgeons from around the country and received three different treatment recommendations: 1) Brace her to slow the progression 2) Cast her immediately in a traditional Risser cast since it was progressing so quickly and she was too young for spine fusion. However, he was concerned that the cast might make her pulmonary problems worse and could cause chest wall deformity. He warned us that she would face surgery in her early life and beyond. 3) Travel to Shriners Hospital in Erie, PA for Mehta casting specifically since only a few places in the US offered this treatment with the correct equipment and training.
I then dug deeper into my research on Risser vs EDF/Mehta casts for non structural progressive infantile scoliosis. After a few long nights of reading everything I could find in countless websites and medical journals, I found the ISOP site www.abilityconnectioncolorado.org/newsite/infantilescoliosis and the CAST support group. Heather and the others provided the critical information and support that allowed us to make an informed decision regarding the right treatment for our daughter. By finding out about Early Treatment when Sophia was so young, we were able to harness her rapid growth during the first two years and not just slow the progression but correct it! It also treated the rotation of the spine, which in Sophia’s case we were told was significant. This treatment has allowed her to escape a childhood filled with painful and dangerous surgeries required to save her life. Instead, we were able to gain access to a non-invasive, gentle form of correction that has “taught her spine to grow straight”.
We drove from our home in Indianapolis, IN to Shriners Hospital in Erie, PA to have Sophia’s first Mehta cast applied in June 2007 when she was 8 months old. She had a total of 8 casts done in 14 months. Sophia transitioned to a Providence Brace in August 2008, which she wears 11 hours at night only. She can be a normal, healthy child the rest of the day. Check ups with x-rays in October 2008 and March 2009 showed that her spine is staying straight and de-rotated. We will have another check up in 4-6 months and continue to brace at night until then.
Her sleep apnea has resolved, her reflux and GI problems are greatly improved and she is eating and growing like crazy (90+ percentile on height and weight now!). While her muscle tone has improved, she is still on the low side. She is prone to pulmonary issues, but went an entire year without any problems. Overall, by correcting her spine, we have greatly improved her overall health. We also saw a genetics specialist who tested for everything they could test for and found nothing. So Sophia really is one in a million!
Below are the before and after measurements of each of her 8 casts. Due to many factors, including doctors changing hospitals, the chance to be treated by Dr. Mehta herself, and finding the right treatment fit with a particular program, Sophia was treated at multiple locations across the United States. We are grateful that we now have options when just a few short years ago, there were only two locations in the US that had the training and proper equipment to provide this life saving treatment. And before that none! I can’t thank ISOP and Dr. Mehta enough for all that they have done. Their commitment and dedication to this cause truly has changed the course of Sophia’s life. We will be forever grateful!
Cast#1: June 7, 2007
COBB 36 degrees out of cast -> 29 degrees in cast
RVAD 32 degrees out of cast -> 27 degrees in cast
Significant rotation
Cast#2: August 9, 2007
COBB 36 degrees out of cast -> 25 degrees in cast
RVAD 33 degrees out of cast -> 22 degrees in cast
Significant rotation
Cast#3: October 15, 2007
COBB 22 degrees out of cast -> 17 degrees in cast
RVAD 18 degrees out of cast -> 35 degrees in cast
Cast#4: December 11, 2007
COBB 20 degrees out of cast -> 7 degrees in cast
RVAD 35 degrees out of cast
Cast#5: January 28, 2008
COBB 20 degrees out of cast -> 0 degrees in cast
RVAD 35 degrees out of cast
Cast#6: February 14, 2008
COBB 19 degrees out of cast -> 11 degrees in cast
Significant rotation
Cast#7: April 10, 2008
COBB 11 degrees out of cast -> 7 degrees in cast
Cast#8: June 3, 2008
COBB 11 degrees out of cast -> 5 degrees in cast
Minimal to no rotation
Transitioned to Brace: August 2008
COBB close to 0 degrees out of cast (too small to measure)
No rotation
by mmcnett | Jan 10, 2014 | Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories, Progressive Infantile Scoliosis (PIS),
Everyone who meets my son, Jackson, immediately thinks he is quite the charmer! I sincerely believe that is partially due to his innate personality, and partially due to the resilience and character he has developed on his journey with Progressive Infantile Scoliosis (PIS).
Jackson was born on May 5th, 2010, weighing a very average 7lb 6oz. He very quickly became the love of my life and a very happy baby. Other than his reflux, Jackson seemed to be healthy and thriving. When Jax was 4 months old, my husband expressed a concern to me that he thought Jackson’s back looked crooked. I didn’t think much of his comment and assured my husband it was probably because Jackson’s core muscles weren’t yet strong enough to support his weight. The very same day, my mother said to me: “Sometimes when I’m rocking Jackson to sleep, it feels like one side of his back is bulging.” Suddenly, I began to worry that something might be awry with my seemingly perfect little guy.
Being a pediatrics registered nurse myself, I felt ridiculous making that first phone call to Jackson’s pediatrician (where I worked at the time) and asking for an appointment because “Jackson’s spine looks crooked.” In retrospect, it was the most important phone call of Jackson’s life. One glance at Jax, and his doctor immediately referred us to a well-respected children’s hospital for an orthopedic consult. Although, only one week earlier, Jackson had had his 4-month well check up, and his spinal curvature had been completely overlooked. *** An Infantile Scoliosis exam is now part of routine baby well visits at Jackson’s pediatrics office! ***
As soon as we returned home from the pediatrician’s office, I went into research mode and began searching the internet for reliable literature on Infantile Scoliosis. I found very little information. What I did find, presented only “doom and gloom.” I even brought out my pediatric nursing textbook which contained exactly one sentence on the subject: “Scoliosis with an onset before age 3, having a very poor prognosis.” My head was swimming, my heart was pounding, and I felt utterly alone. That’s when I discovered the website for ISOP and soon connected with Heather on the telephone.
My discovery of ISOP was truly a turning point for me. It gave me valuable resources and the confidence to utilize them. In a matter of days, I cancelled Jackson’s appointment with the local children’s hospital and made an appointment with the Shriner’s Hospital Network. Jackson was first seen in Philly at age 5 months. There, his first x-rays were taken, revealing a COBB of 20 degrees and an RVAD of 18 degrees. Because Jackson’s measurements were truly “borderline,” we were instructed to watch and wait for 3 months. During those 3 months, Jackson had an MRI which was thankfully normal. From age 5 months to 12 months, Jackson’s curve and RVAD (rib vertebral angle degree) stayed mostly stable. We continued to “watch and wait” to determine if my son’s scoliosis was of the progressive nature, or not..
Suddenly, Jackson’s x-ray taken at 14 months old revealed a COBB for 45 degrees. His scoliosis was now clearly progressive, and it was time to take action! Jackson was scheduled for his first Mehta cast at the Shriner’s in September 2011, when he was 16 months old. That first cast was difficult on all of us – probably more so on mom and dad than on Jackson. It took our little man about 2 weeks to re-learn how to sit without support, play on the floor with his toys, and run around. Soon, however, he was back in full swing!
Jackson’s first 5 casts were applied at Shriner’s in Philadelphia. Thankfully, the combined efforts of those 5 casts corrected Jackson’s standing, out-of-cast COBB from 45+ degrees to 18 degrees. After Jackson’s 5th Mehta cast, we made the decision to transfer Jackson’s care to Shriner’s Hospital in Greenville, South Carolina. We wholeheartedly believed in Dr. Min Mehta’s EDF casting methods and the integrity of her work and wished to continue with Mehta casting to treat (and hopefully cure) Jackson’s PIS. Our family just needed to do so in another place where where Dr. Mehtas techniques were being followed to the letter. ie: Jackson was able to benefit from a cast without shoulder straps because the location of his curve was low. A curve above T-8/9 is best addressed by a Mehta cast with shoulder straps.
The Shriner’s Hospital in Greenville, SC is an incredible place! Jackson now looks forward to going for his specialized EDF Mehta Casts. Prior to Jackson’s 8th casting, his standing, out-of-cast COBB measured only 4 degrees! Jackson’s orthopedic surgeon in Greenville is strongly committed to maintaining this correction, so he has continued to cast Jackson in order to train Jackson’s muscles and ligaments to maintain this straight spinal alignment. In March 2013, Jackson had his 9thMehta cast applied. For the first time, we were instructed to return to Shriner’s Greenville WITHOUT REMOVING this 9th cast because there is a possibility it will be used to construct Jackson’s removable brace. Jackson’s doctor is aiming for a 0 degree measurement before graduating Jackson into a brace.
When we returned to Shriners on May 22, 2013, Jackson’s x-rays showed that his spine measured 0 degrees! He was completely straight! Jackson’s doctor opted not to cast Jackson a 10th time, but instead to mold him for his TLSO brace which he received in early June. We continue to be overjoyed and utterly thankful for all those who played a role in CURING our son! “Cure;” what am INCREDIBLE word!
Still, Jackson will continue to proudly lift his shirt and show the world his BRACE! He is so proud to wear his new brace and often proclaims “I love it!” to anyone who asks. It has not hindered his spirit in the slightest.
In his Mehta cast, Jackson: rode a rollercoaster, becamea big brother, took a train ride, petitioned Duck Tape Brand to donate a display to Shriner’s Greenville, hunted for Easter eggs, met The Wiggles, watched a monster truck show, played soccer and baseball, learned to use chopsticks, went trick-or-treating, traveled to DC, went to preschool, and developed wisdom well beyond his years. He is a true hero in my book!
before and after xrays Jackson’s measurements: (standing, out-of-cast)
Prior to Cast #1: COBB 45+, RVAD 30+
Prior to Cast #2: COBB 40, RVAD 26
Prior to Cast #3: no standing, out-of-cast x-rays
Prior to Cast #4: COBB 22, RVAD 22
Prior to Cast #5: no standing, out-of-cast x-rays
Prior to Cast #6: COBB 18, RVAD 4
Prior to Cast #7: no x-rays
Prior to Cast #8: COBB 4, RVAD 0
Prior to Cast #9: no x-rays
Prior to TLSO Brace: COBB 0, RVAD 0
Jennifer (Jackson’s Mom)
Pediatrics Nurse
Photographer with Favorite Things Photography
“We are the music makers, and we are the dreamers of dreams.”
– Willy Wonka
by mmcnett | Dec 15, 2013 | Infantile Scoliosis, Infantile Scoliosis Blog, Our Stories, Progressive Infantile Scoliosis (PIS),
Fight for your babies, mamas and daddies…
Andrew’s life started with a full term pregnancy and a healthy baby born to a couple just about to celebrate 3 years of marriage. This story your about to read is long and includes a lot of details that might not seem significant to his scoliosis journey but I think it’s important to paint as clear a picture as possible of what life was like for us and hopefully encourage you when the road feels dark and overwhelming and give you hope that you can make it through this and that it is worth it.
At 10 days old, Andrew started “spitting up”. (more like a waterfall pouring out of his mouth) Seemingly everything that went in his tummy, was coming right back out. After talking with the advice nurse, we took him to the hospital within just an hour or so of onset. The amount of spit up combined with his tiny newborn size, he was already dehydrated on arrival. He wouldn’t hold anything down so an iv was needed. After the hospital tortured my tiny little 10 day old baby trying to get a needle in, they decided to transfer us to the children’s hospital. After admitting Andrew as inpatient, running a series of blood tests, stool and urine samples, getting an iv in for 4hours before it fell out of his scalp, he kept just enough in to gain a few ounces so they sent us home saying he must be fine. The vomiting continued and we were seen outpatient for imaging and weight checks as he struggled with dangerous weight loss. After everything was ruled out, he was finally diagnosed with reflux. Andrew’s reflux was so severe that he was diagnosed as failure to thrive and was in a constant battle to get anywhere near the growth chart.
At a feeding clinic for the reflux, they did a full exam and in addition to being low tone, I was told Andrew had torticollis. I was given all kinds of suggestions and exercises to do at home to strengthen his sternocleidomastoid muscle. Nothing worked. At 6 months old, Andrew was referred to physical therapy through Early Intervention. On our very first visit, the PT asked to strip Andrew down to diaper and look at his whole body. She looked at his spine and it was very clearly curved. She explained to me that scoliosis wasn’t a life threatening situation and some people live with it for a life time. She called the pediatrician and told him her findings and Andrew and I went into see him for an appt. Andrew was sitting on my lap in a diaper with his back to the door when the doctor walked in and he saw the curve with the naked eye immediately. We were both baffled. This giant curve seemed to appear overnight. We had been in clinic several times a week for months for reflux and growth problems and had never seen a curve. It’s hard to know now if it had been obvious much longer and we just missed it focusing on other issues or if it truly progressed as rapidly as it had seemed.
The pediatrician referred us to an orthopedic specialist at our local children’s hospital where they did xrays and confirmed the scoliosis. He measured Andrew’s film at 45 degrees and told me we would need an MRI to look for any congenital abnormalities that might not show on the xray. The ortho told me there was no rush. This wasn’t anything to worry about right now and sent us on our way. Leading up to this appt, I had googled unsuccessfully night after sleepless night trying to learn something about scoliosis in infants. At one point the ortho mentioned cast and that one word is what led me to www.abilityconnectioncolorado.org/newsite/infantilescoliosis and the Yahoo support group. That one word he casually threw out is what essentially changed our lives because it got me on the right path.
I didn’t hear anything about scheduling the MRI for a few weeks, so I called and finally got it scheduled, again with no urgency except for my own. The MRI results were sent to a neurosurgeon in the same children’s hospital as our ortho. The radiologist report said there was no evidence of tethered cord. Thankfully the neurosurgeon read the films himself because Andrew did indeed have tethered cord as well as syringomyelia. We had a follow up MRI to check for chiari malformation which was negative.
The ortho wanted to just monitor Andrew without any intervention. Wait and see. My baby was struggling to survive with severe reflux causing failure to thrive, delayed gross motor skills, a tethered spinal cord and now an aggressive scoliosis that was trying to crush his heart and lungs and the doctor wanted to wait. Scary. Scary as a first time mom. Scary as any mom. Scary. Period. I didn’t know much about casting yet but I asked him if he had heard about Mehta casting because of what I had read and heard from other families on the Yahoo support group. He said he had heard of it and knew a doctor in New York that could probably talk him through it over the phone. I never went back to that doctor again. I’m sure he’s a very qualified doctor for other pediatric orthopedic conditions but it was clear progressive infantile scoliosis was not one of them.
Andrew was unable to sit unassisted or bear weight on his legs at all at this point. His motor skills were getting further and further behind and his outlook looking more and more difficult. At 11 months old, Andrew had surgery to release the tethered cord. The surgery was smooth and aside from a site infection that cleared with a round of antibiotics, there were no complications.
After researching options and talking with families that were gracious enough to share their very personal stories, I knew where I wanted to go for treatment of Andrew’s progressive infantile scoliosis. I knew what I wanted for my son but I didn’t know how to get there. I knew I needed to travel out of state to get to the hospital I could trust to treat this very complex condition. I knew I couldn’t afford it. Shortly after Andrew was born, I quickly became a single mom despite all my picture perfect plans for our family. I was doing this alone and I didn’t have money and I was exhausted and scared and had no support system behind me.
There is a hospital local to us that does casting. They call it Mehta casting. They have the proper casting table. I knew in my heart though that they weren’t doing proper Mehta casting and I knew in my mommy gut that this wasn’t the right place for us to be. I applied for that hospital because I needed a plan. I knew I didn’t have to go there but if I couldn’t get to the out of state hospital, this was the best I could do. I felt sick about it, but I had to at least do something to start. Precious time is ticking. Early treatment in vital. These words kept repeating in my head day and night. We got accepted to this hospital and I felt zero relief. I was heart sick about it.
With our appt scheduled at the local casting hospital, I finally got the courage to apply to the out of state hospital. I didn’t know how I was going to get there. I didn’t have anything figured out but I knew that’s where we needed to be. That feeling never wavered in my heart. I knew.
While waiting for paperwork to process at the out of state hospital, we had a consult with the local casting hospital. You know those situations in life where you just know something isn’t right? I felt that. I felt it deep. The doctor did not have a bedside manner that gained my trust, he was shouting to a staff member in the hallway right in our sight. I felt awful there. When I asked questions, I was treated poorly and as if I shouldn’t be asking the doctor questions. I was the mom, he was the doctor. He was the boss and I wasn’t. My heart hurt. I was scared for my son and did not feel good about this connection or trusting my tiny little person in this doctor’s care. I set the casting appt there because I had to. I couldn’t travel out of state. I couldn’t afford it. I couldn’t do it alone. My husband was gone, I needed to work.
Then the letter came from the out of state hospital accepting my son. I was over the moon. I cried tears of joy and held my baby and assured him everything was going to be okay. We were going to make it. We were going to do it. I didn’t know how but it was happening. It. Was. Happening.
The care coordinator at the out of state hospital and I had a long phone conversation discussing what was next and what to expect and she answered all my questions. I just needed to wait for a call back with a casting date and we were set.
Then she called back. She told me the doctor at the out of state hospital reviewed our case and determined our local casting hospital could handle it. I was devastated. I hung up the phone and cried my eyes out. Heart broken and scared. Again. I was in the car when I got the call and as soon as I got back home, I went straight to the yahoo group and shared what was happening. We were being stopped from going to the hospital I trusted by logistical red tape. At this point, the families on the support group were my life line. They knew. They understood.
A family on the Yahoo group who are patients at the hospital I was trying to get Andrew to heard my cry for help. They talked to the care coordinator at their next visit and explained our story and my heart for my son to be treated there. The family came back and told me they found out I could fly down to the out of state hospital for a clinic visit to meet the doctor and let him see my son in real life rather than his medical file and see if he would reconsider Andrew as a patient.
Time is ticking. Early treatment is vital. The words continued to echo.
I went ahead and kept the casting appt at our local hospital hoping that any cast would be better than no cast. We got Andrew’s first cast locally and I was so sad. The cast didn’t have plaster of paris, it didn’t have a cut out in the back for rotation, it wasn’t perched on his hips which caused it to shift around on his tiny body. I couldn’t wait for our out of state clinic visit to meet the doctor I wanted and to show him the type of cast that was available to us locally.
2 weeks after Andrew got his local cast, we were on a plane to the out of state hospital. We had a clinic visit, I shared my concerns with the doctor, he did a thorough exam of Andrew, re-measured his spine which was actually 60-65 degrees with rotation, and we left that day officially accepted as patients to the hospital I trusted and knew without a doubt was doing proper Mehta casting and had a high case load with a lot of expertise for cases just like Andrew’s. We still had a very long road ahead of us but for the first time, I felt some peace that everything just might be okay.
We flew back a month later for a casting date. Andrew woke up from anesthesia but his oxygen saturation was low. He was very worked up in recovery, so they let him come back to his inpatient room still on oxygen so he could be with mom and hopefully calm. In addition to low O2 sats, he wasn’t acting like himself. He wasn’t recovering from anesthesia like he always has at home. He started becoming weak and unresponsive. The room filled quickly with doctor, PA, anesthesiologist, nurse, charge nurse….it was suddenly all hands on deck. They took Andrew from my arms and put him on the hospital crib. Checking his cast, his vitals, everyone talking collectively and no room for mom to be near anymore. I was terrified. He was given narcan to reverse all the meds he had on board and that brought him back to baseline with the exception of oxygen. He wasn’t able to breathe room air but was responsive again and it looked like we were out of the danger zone. After much review and discussion, it was determined Andrew was not acclimating to the change in altitude from our home state to the hospital. I was heart sick. I have just fought against so many challenges to get him here and here makes him sick.
We came home and saw a pulmonologist. He diagnosed Andrew with restrictive lung disease and agreed Andrew could safely fly and be at elevation….with oxygen. A baby on oxygen just to get to an out of state hospital to get a cast that some people tell me we can get done locally? My heart knows otherwise. We powered through. I started the fight to get oxygen equipment. Insurance was refusing it and now I’ve got travel expenses and portable oxygen rental. There is no way I could afford all of this. I was told that some local shrine’s help with travel expenses but because we had a local hospital we could go to, that there is no way they would cover our expenses to get to a different one.
I tried anyway.
They accepted us. No questions asked.
I got approval to pay for our travel to the out of state hospital without an ounce of hesitation from a group of kind hearted generous men who had never even met us before.
So, 6 weeks after our first out of state cast, we were ready for the next cast trip with oxygen in tow. Let me just brag on my son for a minute. That kid is amazing. He played and laughed and giggled and could care less that he needed a canula in his nose to breathe. Kids are strong resilient little people and my son was no exception. Never ever doubt your kiddos or let your fears control their outcome. They got it handled. Totally.
After months of advocating and fighting like crazy, insurance approved the oxygen. When it comes to your kiddo’s health, fight. When you feel like giving up, fight. When it feels like you’re totally defeated. Fight more.
We travelled for a series of 8 casts, 2 full time braces and 2 night time braces. There were times of celebration and times of defeat. When we got to our 6th cast, things started to feel a little dark. We weren’t making progress and my dreams of a cure seemed farther and farther away. Guess what? Good doctors don’t quit! The PA gave me a pep talk and told me we’re going to keep going. We’ll keep going as long as we have to. We’re not giving up. The very next cast, Andrew’s spine was completely straight in cast. We went from fear to victory in ONE CAST!
We casted for 14 months, we braced full time for a year, we did night time bracing for 6 months…..Andrew looks phenomenal. His neck straightened, he learned to walk, he learned to run and his spine is completely straight. 2 ½ years ago doctors told me he would need spinal fusion in a year. 2 ½ years ago doctors said his outlook was poor. 2 ½ years ago, I am the only one that believed in a miracle. Today, we have it. Today, we are celebrating a straight spine in my son’s body. We gave up baths and sand and beach days for a while but the rest of my son’s life is saved. Absolutely none of what we had to miss matters now, not one single thing.
Metha casting works. Early treatment can be a cure. Fight for your babies mamas and daddies. It’s worth it.
by mmcnett | Nov 20, 2013 | Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories, Progressive Infantile Scoliosis (PIS),
We were so excited when we found out we were pregnant with our first child!
On Tuesday, October 5th, 2010, Brayden Richard was born via c-section at 11:33 am. He came out screaming and hasn’t stopped talking since.
After his 2nd appointment with the pediatrician we were off to the local children’s hospital for testing when Brayden was 10 days old. He was having troubles keeping food down and I was breastfeeding at the time. He was diagnosed with reflux. We ended up seeing a gastroenterologist and had a couple more tests run to make sure there was not anything else wrong. Everything led us back to Brayden having reflux.
Being first time parents we were worried about our son getting enough nutrients after being diagnosed with reflux. Little did we know this was just the beginning of what was yet to come.
Between the age of 3 and 4 months old, Brayden has been in the hospital with bronchiolitis twice and was also diagnosed with torticollis. We were becoming very familiar where things were located at our local hospital. Our pediatrician recommended physical therapy so that’s what we did.
At 5-month’s old, we noticed a rib hump on his chest. We asked his pediatrician about it. He said it was probably extra cartilage and to monitor it for a few weeks. If it got worse we needed to call and he would get us in for an X-ray. It was not any better and seemed to be getting worse so we went for the X-ray. Our pediatrician called with the results and we were not prepared for what we were about to hear. Honestly, can anyone ever be prepared for hearing something is wrong with your child?
We got in to see the Pediatric Orthopedic Surgeon within a couple of weeks. He confirmed the diagnosis of Progressive Infantile Scoliosis (PIS). He had convinced us that in a lot of cases, this corrects itself and to continue physical therapy and come back in 4 months and have x-rays taken again. You know…the watch and wait game? So we played it because we did not know any better and trusted our doctor. He seemed to be doing better at 10 months when x-rays were taken. He said we need to wait until Brayden is walking to get a “true” reading on the x-ray and this would give a better idea if his PIS was correcting itself or getting worse. So we continued physical therapy and played the watch and wait game again.
Brayden began to walk at 12 months old and at 14-months old, we had x-rays taken again. We definitely were not prepared for what we were about to hear. The physical therapy prescribed was not helping Brayden and his curve was now at 42 degrees. The doctor recommended casting but had only had one other case that was casted in a Risser cast as he was not familiar with Early Treatment with Mehta’s specialized EDF casting techniques. Brayden’s doctor advised us to get an MRI to rule out any other issues that may be causing his PIS. He also recommended that we get a second opinion. He was very helpful and answered all our questions.
Within a couple of weeks, Brayden had an MRI done. We were not anticipating anything to unusual to come from this but to confirm his PIS. Nope, we were wrong again. He did not have a chiari malformation yet but there was a possibility he could form one as there were signs of this on his MRI. Luckily this was not anything to be worried about at the moment and was not causing any other issues at that time. The doctor recommended we do routine MRIs every so often to make sure it did not form into a chiari malformation.
After this news, we spent the next couple of days researching for other options for our son. We found the ISOP website and CAST infantile scoliosis Yahoo Group. Both of which were a HUGE resource for us getting the information we needed to make the best decision of treatment for our son.
We found a doctor at Cincinnati Children’s Hospital Medical Center (CCHMC) about 2 hours away from our home. He confirmed his curve was 42 degrees and said Brayden was a perfect candidate for the ET with Mehta’s specialized casting. We were able to get in for casting the next week. It only took him a short while to figure out how to get around with it on. He continued to sleep on his belly as he always had and nothing seemed to bother him.
Brayden is down from 42 degrees to 25 degrees and in his 5th cast currently. Although we miss allowing him have bubble baths, playing in the pool and the squishy hugs, we know that this is just a small sacrifice for improvement to his future health.
Recently, Brayden had another MRI on his brain and upper spine to check the possible chiari malformation. We had great news from his neurosurgeon. This has cleared itself up and there are no possible signs of any chiari malformation. Yeah! We were so excited about this for us and Brayden. We are getting there one step at a time. God is good! All the time!
The last couple of years have been bumpy but we have met many friends along this same path and together we will fight infantile scoliosis thanks to Heather and Dr. Mehta who have helped pave the way for us!
by mmcnett | Oct 25, 2013 | Infantile Scoliosis, Infantile Scoliosis Blog, Our Stories
When their beautiful 15 month old daughter, Karleigh, was diagnosed with progressive infantile scoliosis (PIS), Kim Westmiller and her husband had no idea what they were up against. Fortunately, they were able to connect with Heather Hyatt Montoya and the Infantile Scoliosis Outreach Program (ISOP) for guidance, support and answers. Answers that led them to Early Treatment with Mehta Growth Guidance Casting that involves the application of specialized casts every 8 weeks that allow 3 year old Karleigh’s spine to actually grow straight. A gentle corrective method rather than invasive surgery and the resulting complications.
Thankful for their daughter’s progress, the Westmillers decided to hold an event that would celebrate Karleigh’s health and success while raising money for ISOP, making sure that support continues for other parents of children with infantile scoliosis.
On October 20, 2013, The Westmillers hosted *Karleigh’s Cause* at Hearthstone Manor in Depew, NY, featuring Terry Buchwald and his wildly popular Tribute to the King (Elvis that is)! The community enthusiastically attended and supported the live and silent auctions raising well over $13,000!
The Westmillers are a powerful testament to Parent Power and their efforts and belief in ISOP are truly an inspiration. Our deepest thanks to you and Karleigh, as well as your amazing community, including the many event sponsors and volunteers, for envisioning Karleigh’s Cause and making it a huge success. Thank You!
by mmcnett | Oct 21, 2013 | Infantile Scoliosis, News, News, Parent Power NEWS
When their beautiful 15 month old daughter, Karleigh, was diagnosed with progressive infantile scoliosis (PIS), Kim Westmiller and her husband had no idea what they were up against. Fortunately, they were able to connect with Heather Hyatt Montoya and the Infantile Scoliosis Outreach Program (ISOP). Through Heather and ISOP, they found answers to their questions and the resources that led them to Early Treatment with Mehta Casting. These specialized EDF casts are applied every 8 weeks and continue to have a straightening effect on 3 year old Karleigh’s spine.
Thankful for their daughter’s progress and wanting to give something back, the Westmillers decided to hold a special event that would celebrate Karleigh’s amazing success and also help raise money for ISOP so that other parents of children with infantile scoliosis could also access the kind of help and resources that they had received.
On October 20, 2013, The Westmillers hosted the first ever, Karleigh’s Cause, at Hearthstone Manor in Depew, NY. The surrounding community rallied around Karleigh’s Cause by attending the event, which featured Terry Buchwald’s, Elvis-inspired, Tribute to the King, as well as live and silent auctions to help raise money for ISOP. In total, the event raised nearly $14,000 for ISOP!
Karleigh’s parents are a powerful testament to the steady devotion and determination it takes to navigate the many health options and difficult decisions they faced upon learning of their daughter’s potentially fatal condition. Also impressive, is the selfless approach and tireless effort they put into making Karleigh’s Cause a huge success, ensuring that other families of children facing similar circumstances will have the needed resources, support and opportunities for treatment that ISOP helps provide.
Thanks to you and Karleigh, and the overwhelming support of your community, event sponsors and volunteers, Karleigh’s Cause was not only an amazing success but truly inspirational.
On behalf of the Infantile Scoliosis Outreach Program (ISOP) and the many families and children who will benefit from your generosity, we say, Thank You!
by mmcnett | Oct 20, 2013 | Infantile Scoliosis, Parent Power NEWS, Testimonials
October, 2013 – Karleigh’s Cause – A Community Success!
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When their beautiful 15 month old daughter, Karleigh, was diagnosed with progressive infantile scoliosis (PIS), Kim Westmiller and her husband had no idea what they were up against. Fortunately, they connected with Heather Hyatt Montoya and Infantile Scoliosis Outreach Program (ISOP), they found answers and resources that led them to Early Treatment with Mehta’s Growth Guidance Casting (MGGC). |
These specialized casts are applied every 8 weeks and continue to have a straightening effect on Karleigh’s spine. Overjoyed with their daughter’s progress and wanting to give something back, the Westmillers founded Karleigh’s Cause! This family event was a celebration of their daughter’s success and a fundraiser for ISOP.Karleigh’s Cause was held October 20, 2013 at Hearthstone Manor in Depew, NY. The community rallied behind this young lady in full force with a full house in attendance to experience Terry Buchwald’s Tribute to the King, bid in the live and silent auctions, and generally have a blast! In total, the event raised nearly $14,000 for ISOP! The Westmillers navigated a confusing array of health options and made some tough decisions in the face of their daughter’s potentially fatal condition. Let’s just say that they’re a true testament to PARENT POWER! It was important to this family that other parents of children with PIS could access this priceless resource.We can’t say enough how grateful we are for all of your efforts that contributed so successfully to Karleigh’s Cause and to ISOP. Your gift allows Heather to continue to champion straight spines for other children in Karleigh’s situation. The overwhelming support from your community created an event that was an amazing success and truly inspirational. From the bottom of our hearts, thank you. |
by mmcnett | Oct 20, 2013 | Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories, Progressive Infantile Scoliosis (PIS),
Our daughter, Olive, was born on September 22, 2010 at 3:46pm. She was full term with no complications, aside from the umbilical cord being around her neck right as she came out of the birth canal. This was cut immediately and there were no issues following. While this was scary, we do know that the cord was not around her neck for long, as her heart rate was consistent all throughout the labor. Olive has had a very healthy childhood thus far with only a few bouts with allergies and ear infections. She has met all of her developmental milestones and is a very happy and outgoing child.
When Olive was about 3 months old we noticed that she seemed to favor leaning her head to one side, so we started propping her head up with a rolled cloth when she was sleeping in her carrier or sleep positioner. At 4 or 5 months we noticed that her back seemed to have a bit of a curve to it and we asked her pediatrician about it. We were told not to worry, that it would straighten up on it’s own.
At about 6 months, we noticed that as she was sitting up, her ribs would stick out further on one side than the other. Once again, we were told it would straighten up on it’s own, but we requested that our pediatrician refer us to an orthopedic doctor.
We got in to a doctor at Orthopedic Associates here in OKC in early August 2011. They took an x-ray of her there, but since she was not yet standing, we had a hard time getting a good look at her spine. They ended up having me “dangle” her in the air, which we now know was stretching her spine out and not giving an accurate look at the curvature. The doctor there told us that 80% of the time Infantile Scoliosis corrects on it’s own, but that he would recommend us to see an Orthopedic Surgeon in 4-6 months. We went ahead and scheduled the appointment with a surgeon at OU Children’s Hospital for December 6, 2011, wanting to get the appointment in on 2011 insurance.
At the appointment on December 6, they were able to do a standing x-ray of Olive’s back that showed her curve to be at 53 degrees. The doctor said that we needed to get her in for an MRI immediately to make sure she didn’t have any other issues causing the curvature. Barring those issues, he wanted us to start casting immediately. We were told that the casting procedure he does was not for correction of the curve, only for maintenance until they can do surgery when she is older. Needless to say, we left in a whirlwind of confusion, sadness and hopelessness.
We immediately got online and searched for a support group- we had been told that IS is very rare, but were hoping that someone out there could give us some encouragement and advice. We found both at the ISOP website, where we learned for the first time about Dr. Mehta and her IS casting technique. We immediately got on the message board there, and were connected with two families in Oklahoma who had children with IS. We have connected with both of those families- Jason & Hollie Lee (Jonas’ family) and Cyndy McKinney (Londynn’s family)- and they all have directed us to Salt Lake City Shriners Hospital, and specifically to Dr. Jacques D’Astous. We applied to SLC Shriners, and in a whirlwind of events we ended up getting an appointment for Olive to be casted just 3 days after submitting our application. We were on a family vacation at the time and ended up leaving the rest of our family and flying to all the way to SLC, not knowing at all what we were getting into!
At Shriners, they did another standing xray and found her curvature to be 73 degrees- a big jump from what it had been just a few weeks prior at the Dr. back home. Dr. D’Astous also did an xray where they held Olive’s head and feet and pulled her in opposite directions, to show how flexible her spine was. In this xray her spine was able to straighten to 25 degrees, which was a very good sign! They did the first cast and were able to get her spine to around 29 degrees in the after cast xrays- how amazing!!
We returned home and adjusted to life in the cast- no more baths or swimming, and we had to learn to be extra careful while eating, drinking, diapering, etc, to protect the cast. Olive had just learned to walk unassisted a few weeks before she was casted, so it was a BIG learning experience after the cast. She could no longer walk, sit up, stand up, roll over, etc, on her own. She just laid on her back and it broke our hearts! When she did get up and walking, she would fall easily and we were scared for her poor little head- we even considered getting a helmet for her in the first few weeks. Thankfully, though, after a few weeks she was able to build muscles that got her up on her feet and falling less often!
We’ve since had 3 more casts and are currently in our 4th cast. The 2nd cast kept us at the same 29 degrees, the 3rd cast got her down to 27 degrees and the 4th cast has her at 19 degrees! They are considering bracing after a few more casts, but they really think that they can cure her and bring her all the way down to 0 degrees!! We are so thankful to ISOP & Heather for pointing us in the right direction- our prospects here in Oklahoma City were not good, and had we not found Salt Lake City Shriners Hospital and Dr. D’Astous, Olive’s future would not be nearly as hopeful as it is now.
Picture 1- Olive, 14 months, before casting
Picture 2- Olive, 14 months, in first cast at Shriners Hospital
Picture 3- X-rays comparing before cast 1 (right) and after cast 1 (left)
Pictures 4 & 5- Olive, after cast 2, 19 months
Pictures 6 & 7- Olive, after cast 3, 22 months
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.
by mmcnett | Aug 31, 2013 | News
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
