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.
