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| Casting days for Infantile Scoliosis-2nd cast |
Today I thought I would share Ryan's story. Since his scoliosis is fresh on my mind due to his 6 month appointment being changed from March 16th to Monday! He will go on Monday for an xray and check up of his little spine. Many of you may already know Ryan's story, but for those that do not I thought I would share. Before sharing I'll give an update so you will know what he has been through since I wrote his story a few years ago.
Ryan has been in a brace since September 2007 after having a series of six plaster cast over a fourteen month period . His curve has gone up and down, but the brace has basically held him. He has gone from wearing it 23 hours a day to wearing it only at night and currently wearing it 14-16 hours a day.
Ryan started this whole journey at 15 months of age and will be 6 years old in April. The older he gets the harder it gets. For him mainly, but for me too as a mom.
This past year he began asking, "Why did God make me this way?" "Why doesn't Matthew have scoliosis?"
And then the, "I HATE my brace and I hate scoliosis!" I can't argue with that.
Every night at bedtime we have a battle. Sometimes it is short and sweet and other times it is long with tears.
Every night he tries to get out of wearing his brace. And every night I explain why he has to wear it. He gets it, but HATES it!
He told me last week he wants to talk to his doctor about not wearing it anymore. Oh my dear God how I wish that could be!!! I always go to every appointment cautiously optimistic. I never want to get my hopes up just to be let down. I pray for a miracle of course, but what if God is not ready for Ryan to be healed.
So we just take it one day at a time, hope for the best and pray for a miracle. I hope you will take the time to read Ryan's story. Share with others, ask questions, but most of all remember what you learn about Progressive Infantile Scoliosis. Monday I will post an update about his appointment.
Ryan's Story
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 and delivered the boys naturally.
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 utero. 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.
Early Treatment with EDF (elongation, derogation, flexion) casting works.
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| Current brace |
1 comment:
Saying a prayer right now for great news for Ryan Monday and LOW NUMBERS!!!
Love,
Heidi
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