Guest guest Posted December 9, 2008 Report Share Posted December 9, 2008 My daughter Sage was diagnosed with Infantile Scoliosis a few moths ago. She's 17 moths old now and has a 35 degree curve and some buckling. A recent MRI has ruled out any obvious CNS issues, and otherwise she seems healthy. Her grandmother is disabled from scoliosis that went largely untreated, and her mom (my wife) has scoliosis too which was treated with a brace for 9 years, 23 hours a day. Sage's older bother and sister (our other 2 children) do not have any spine issues and are otherwise healthy. Being fully aware of my wife's history we kept a close eye on our children's development. When Sage started to sit on her own we immediately noticed the curve in her spine. Even with my wife's own experiences with scoliosis, it was devastating. And we, like so many of you, were left asking 'What should we do?'. Sage has had a couple of visits with the doctors at the Kluge Children's Rehab hospital in Charlottesville, VA. Each visit required xray's and an MRI. They have suggested that we have Sage treated in Rochester, NY. Although other hospitals/doctors were mentioned as well. NY is about 12 hours of driving from our home in County, VA. I've been a member of this group for a while now and am *amazed* at the resilience and power of the human spirit. It makes me hopeful that we too will get through this and that Sage will be OK. I have so many questions that I want to ask the parents who have much more experience than us. But I'll try and ask just one question for now... What I'm interested to know is what to expect in the first few days after the first cast? and I have a lot to learn, but not knowing what the casting process is, or how Sage will react, is what is causing the most anxiety right now. We'll also be driving back from Rochester the day after her first cast and something tells me she's not going to like that one bit. We'll be in Rochester next week. Any help is greatly appreciated. Doug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2008 Report Share Posted December 10, 2008 Hi Doug, My son, Noah, was diagnoised at 21 months with a mid-30* curve as well. He's had great success. We also have a family history of scoliosis. My mother-in-law had sevre adolescent scoliosis and wore a brace for most of her teenage years. She is currently in her 50's and has a 66* curve. Her grandmother also had disabling scoliosis. My husband and I also had scoli when we were teenagers, but it never got so bad that we needed any sort of treatment. And no one in our family ever had a history of Infantile Scoliosis until Noah. I think some moms that currently see the 2 doctors in Rochester will chime in on their specific experiences at that hospital. I can however tell you a few things to expect after the first cast. Sage will probably be groggy and sore. We used Ibprophren for about 24 hours after each casting. She will also probably be frustrated. Noah was extremely frustrated after the first cast because he essentially had to re-learn how to do all of the simple things that he had been doing. For example, he couldn't actually sit on the floor until he was in the cast for about 1 1/2 weeks! We had to prop him up with a pillow or have him sit on a child-size chair. They kept telling us " he'll get it. " To be honest with you - I thought they were crazy. I thought " how in the world are you releasing us from the hospital when my child can't even sit!? " They were right though - he adapted just fine. Just be patient. Another thing that we struggled with was sleep. Noah no longer sleep through the night once he was casted. I believe this was a comfort issue, but also he struggled to roll over. He would roll over in his sleep and then not be able to get back. Eventually he learned how to use the crib bars to turn himself back over. We also had to travel for casting, but we took a plane instead. It was a struggle to have him sit through the 2 1/2 hr plane ride after that first cast. Perhaps you can break up your road trip in 2 days instead of just 1? I think that might really help. Let me know if I can be of anymore assistance. Good luck next week! ~ > > My daughter Sage was diagnosed with Infantile Scoliosis a few moths > ago. She's 17 moths old now and has a 35 degree curve and some > buckling. A recent MRI has ruled out any obvious CNS issues, and > otherwise she seems healthy. Her grandmother is disabled from > scoliosis that went largely untreated, and her mom (my wife) has > scoliosis too which was treated with a brace for 9 years, 23 hours a > day. Sage's older bother and sister (our other 2 children) do not > have any spine issues and are otherwise healthy. > > Being fully aware of my wife's history we kept a close eye on our > children's development. When Sage started to sit on her own we > immediately noticed the curve in her spine. Even with my wife's own > experiences with scoliosis, it was devastating. And we, like so many > of you, were left asking 'What should we do?'. > > Sage has had a couple of visits with the doctors at the Kluge > Children's Rehab hospital in Charlottesville, VA. Each visit required > xray's and an MRI. They have suggested that we have Sage treated in > Rochester, NY. Although other hospitals/doctors were mentioned as > well. NY is about 12 hours of driving from our home in County, > VA. > > I've been a member of this group for a while now and am *amazed* at > the resilience and power of the human spirit. It makes me hopeful > that we too will get through this and that Sage will be OK. I have so > many questions that I want to ask the parents who have much more > experience than us. But I'll try and ask just one question for now... > > What I'm interested to know is what to expect in the first few days > after the first cast? > > and I have a lot to learn, but not knowing what the casting > process is, or how Sage will react, is what is causing the most > anxiety right now. We'll also be driving back from Rochester the day > after her first cast and something tells me she's not going to like > that one bit. > > We'll be in Rochester next week. Any help is greatly appreciated. > > Doug > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2008 Report Share Posted December 10, 2008 Hi Doug, My son, Noah, was diagnoised at 21 months with a mid-30* curve as well. He's had great success. We also have a family history of scoliosis. My mother-in-law had sevre adolescent scoliosis and wore a brace for most of her teenage years. She is currently in her 50's and has a 66* curve. Her grandmother also had disabling scoliosis. My husband and I also had scoli when we were teenagers, but it never got so bad that we needed any sort of treatment. And no one in our family ever had a history of Infantile Scoliosis until Noah. I think some moms that currently see the 2 doctors in Rochester will chime in on their specific experiences at that hospital. I can however tell you a few things to expect after the first cast. Sage will probably be groggy and sore. We used Ibprophren for about 24 hours after each casting. She will also probably be frustrated. Noah was extremely frustrated after the first cast because he essentially had to re-learn how to do all of the simple things that he had been doing. For example, he couldn't actually sit on the floor until he was in the cast for about 1 1/2 weeks! We had to prop him up with a pillow or have him sit on a child-size chair. They kept telling us " he'll get it. " To be honest with you - I thought they were crazy. I thought " how in the world are you releasing us from the hospital when my child can't even sit!? " They were right though - he adapted just fine. Just be patient. Another thing that we struggled with was sleep. Noah no longer sleep through the night once he was casted. I believe this was a comfort issue, but also he struggled to roll over. He would roll over in his sleep and then not be able to get back. Eventually he learned how to use the crib bars to turn himself back over. We also had to travel for casting, but we took a plane instead. It was a struggle to have him sit through the 2 1/2 hr plane ride after that first cast. Perhaps you can break up your road trip in 2 days instead of just 1? I think that might really help. Let me know if I can be of anymore assistance. Good luck next week! ~ > > My daughter Sage was diagnosed with Infantile Scoliosis a few moths > ago. She's 17 moths old now and has a 35 degree curve and some > buckling. A recent MRI has ruled out any obvious CNS issues, and > otherwise she seems healthy. Her grandmother is disabled from > scoliosis that went largely untreated, and her mom (my wife) has > scoliosis too which was treated with a brace for 9 years, 23 hours a > day. Sage's older bother and sister (our other 2 children) do not > have any spine issues and are otherwise healthy. > > Being fully aware of my wife's history we kept a close eye on our > children's development. When Sage started to sit on her own we > immediately noticed the curve in her spine. Even with my wife's own > experiences with scoliosis, it was devastating. And we, like so many > of you, were left asking 'What should we do?'. > > Sage has had a couple of visits with the doctors at the Kluge > Children's Rehab hospital in Charlottesville, VA. Each visit required > xray's and an MRI. They have suggested that we have Sage treated in > Rochester, NY. Although other hospitals/doctors were mentioned as > well. NY is about 12 hours of driving from our home in County, > VA. > > I've been a member of this group for a while now and am *amazed* at > the resilience and power of the human spirit. It makes me hopeful > that we too will get through this and that Sage will be OK. I have so > many questions that I want to ask the parents who have much more > experience than us. But I'll try and ask just one question for now... > > What I'm interested to know is what to expect in the first few days > after the first cast? > > and I have a lot to learn, but not knowing what the casting > process is, or how Sage will react, is what is causing the most > anxiety right now. We'll also be driving back from Rochester the day > after her first cast and something tells me she's not going to like > that one bit. > > We'll be in Rochester next week. Any help is greatly appreciated. > > Doug > Quote Link to comment Share on other sites More sharing options...
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