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
