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!
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
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
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
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)