After 5 years of trying to have a baby, God blessed us with twin boys. My pregnancy was full of uneasy feelings and lots of “what ifs”. There were many complications along with 3 months of bed rest. After the danger point passed, the doctors sent me home. One week after being home I went into labor.
Ryan and his fraternal twin brother, Matthew, were born in April 2005. They were born 4 weeks early, both were healthy. Our boys came home 2 days later.
The boys were about 2-3 weeks old when my mother noticed Ryan’s ribs felt funny. My mother-in-law had made comments about it as well. Not knowing anything about Infantile Scoliosis, I thought this was due to them still being small babies. As Ryan grew, we noticed he always leaned his head to one side. We now know he had torticollis. It was never treated and he slowly outgrew it.
While bathing the boys, around 7 months old, I noticed Ryan’s back protruded on one side. I still knew nothing, but wondered often if something was wrong. At his 9-month check-up, we pointed it out to his pediatrician. She immediately told us she felt he may have Infantile Scoliosis. We had heard of teenage girls having scoliosis, but had no idea babies could have scoliosis. It was a weird feeling not knowing. She referred us to Texas Scottish Rite Hospital for Children in Dallas, Texas. Shortly after the pediatrician’s referral, Ryan was diagnosed with Progressive Infantile Scoliosis. X-rays showed a 29 degree right thoracic curve. They recommended a CT Scan and MRI to rule out any congenital abnormalities. They also wanted us to see a geneticist. We were told they would watch him closely and wanted to see him back in 3 months. At that time, his doctor also talked in-length about Early Treatment with casting. We were stunned and confused, but knew we wanted to avoid surgery if at all possible. If Ryan’s curve continued to progress, casting sounded like the best treatment for him.
In 3 months time, Ryan’s curve had progressed from 29 to 34 degrees. We then knew casting was what Ryan needed, and it would be in our very near future. Ryan still, however, needed the MRI. He and his brother were constantly sick so we had to continuously put this procedure off. Ryan was finally well enough for the MRI and thank God it came back normal. We saw the geneticist and she felt his scoliosis was mainly “positional” while in untero. The geneticist did not think there was an underlying syndrome diagnosis.
The procedures were all done and all came back normal, so the date was set for Ryan’s first cast. He was 15 months old (still a baby), had just started walking and I was SCARED to death. A cast?! A hard cast? No baths, no playing in water. He is going to stink! How will he sleep?! He will not be able to do all the things his twin brother will do! My mind was going crazy with all these bad thoughts of a cast. I needed to talk to someone else who had been through the same thing.
Days before his first cast was applied, I found ISOP on the internet. How had I missed it all those times I was searching for answers and information? I was still so scared and had no idea what I might learn, but ISOP had a support group. I wasted no more time. I immediately joined the group.
Fast forward to November 2008…………Ryan is now in a brace ONLY at night!!!!! He was in a series of 6 casts over 14 months. And wore his brace 23 hours a day for 10 months. Today his curve is down to 8 degrees and he looks GREAT!!!
Casting was nothing like I thought it would be. Within a week Ryan was walking again just fine. His baths? Well, we came up with other fun bath ideas. Playing in the water was just a special treat for the boys when his cast was removed the day before the new one was applied.……..they didn’t miss a thing. Stinking….we just didn’t have that problem. And he slept……like a baby, within a week of his first cast.
Ryan adjusted so well to the cast and didn’t miss a beat. He did everything his twin brother did and more! Looking back, I only wish I would have known about Early Treatment sooner. Ryan would have been in casts very early on. Casting is a gentle method for treating Infantile Scoliosis. And, for most babies, if treated early and properly, has the ability to train their young spines to grow straight, gently and permanently and surgery is not needed.
We are so informed about Infantile Scoliosis because of ISOP and the CAST support group. I have learned more here, and through the support group than what any doctor could have told me. The support group is a God send. I don’t know how I would have made it through without communicating with other Moms and Dads going through the same thing.
If you are just discovering your baby/child has Infantile Scoliosis, join the group. It has a wealth of information for you and allows interaction with other parents who are experiencing the same situations. I cannot thank ISOP and Dr. Mehta enough for all they have done to educate us about Ryan’s condition.
Ryan will go in a few weeks for a check-up and we are in hopes he will be finished with the brace.
Early Treatment with EDF (elongation, derogation, flexion) casting works.
If you have any questions about Ryan’s treatment feel free to email me. Ryanswalk@yahoo.com
To view a blog dedicated to Ryan and others with infantile scoliosis go Here.
Sincerely,
Brant, Tasha, Ryan and Matthew
