Guest guest Posted November 3, 2005 Report Share Posted November 3, 2005 Hi Jenn Sorry, this is happening to , I wish we could cheer her up. These kids just keep taking the knocks dont they. Damian and I have always been very aware of the risk of scoliosis especially with assymetry. Liam has been seeing an ortho specialist every year. Liam (4yrs4mnths) started at 1cm and is now 2cm difference in his length, thats before we started ght.Im expecting that difference to increase. Liam has a lift on one of his shoes and orthotics, this is all we can do to prevent scoliosis at the moment. Liam has no curvature at present, but as with this could develop due to the assymetry and feet problems.If liam runs around all day without shoes he complains of knee pain, which reinforces for us just how much he needs his shoes on. Just writting all this for other parents out there who may not understand, Im sure Jenn understands. Tell , Liam saw a whale jumping from the beach near us today, and " Boy can they curve their backs " Now Liam is going to the GP to see if these spots on his neck that are spreading are the chicken pox, or if something else is causing the high temps. Take care Jody > > Well, we just got home from our annual orthopedics checkup. I am > sure glad that we go every year! When was 5 years old, the > spinal x-ray was pretty normal, and then 8 years old, the x-rays > showed about a 5 degree curve, but he wasn't worried. > Unfortunately, 2 years later today, the xray was obviously a > backwards C, a 12 degree curve. > > He is the second in command at Children's Hospital, and he really > emphathized a couple things that he wanted me to tell of you. ANY > child with RSS/SGA who shows up with scoliosis should be seen and > treated by a " pediatric orthopedic surgeon who specialized in spinal > disorders. " He said that there are many peds endos who do broken > legs/arm type of stuff, and that the technology for treatment of > scoliosis and kyphosis is changing/advancing literally every month. > > He just got back last weekend from an International conference on > scoliosis. > > He did explain again that GH does not cause scoliosis, but rather > causes rapid growth in a child who is predisposed for scoliosis. > That the child would undoubtedly had gotten scoliosis as a teen in > rapid growth, and that the GH makes the rapid growth occur earlier. > > He also said that he wants to see her in 6 months -- if the degrees > have advanced, then we will talk about treatment options. But he > also warned us that for a child whose original xrays were 0 degrees, > then 5 degrees, and now 12, the chance of it continuing to advance > is greater than it stabilizing. Some kids are born with curved > spines, and they stay that same degree. > > We have SO many questions, and would love to hear from anyone whose > child has had spinal surgery for scoliosis. The doctor explained > that the latest very large studies (one just published from the > Netherlands) are really indicating surgery over bracing. > > is very sad, and promptly went up to her room to do > these " ball exercises " the doctor told her to do to " loosen her back > muscles. " > > Anyone with experience, let me know! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2005 Report Share Posted November 3, 2005 hey jenn!! i am sorry to hear this!! i am very interested though in what you might learn and possible treatment options. when we went to shriners for his assmentry last week they did a spinal x-ray (one was never done at chop by the ortho whom we have been seeing since he was 3months old) and they found that he has an 8 degree curve. they told us to come back in 4 months and they will recheck it and that they will brace him early if it starts to change. he will be 5 next month. they also said that it is not caused by his leg length discrepency since it is curving to the right and not the left. he has 2 strikes against him since besides it being a characteristic of rss, it also runs in my mom sides of the family. please give lindsay a ((HUG)) from me and let me know what you find out!! jodie c > > Well, we just got home from our annual orthopedics checkup. I am > sure glad that we go every year! When was 5 years old, the > spinal x-ray was pretty normal, and then 8 years old, the x-rays > showed about a 5 degree curve, but he wasn't worried. > Unfortunately, 2 years later today, the xray was obviously a > backwards C, a 12 degree curve. > > He is the second in command at Children's Hospital, and he really > emphathized a couple things that he wanted me to tell of you. ANY > child with RSS/SGA who shows up with scoliosis should be seen and > treated by a " pediatric orthopedic surgeon who specialized in spinal > disorders. " He said that there are many peds endos who do broken > legs/arm type of stuff, and that the technology for treatment of > scoliosis and kyphosis is changing/advancing literally every month. > > He just got back last weekend from an International conference on > scoliosis. > > He did explain again that GH does not cause scoliosis, but rather > causes rapid growth in a child who is predisposed for scoliosis. > That the child would undoubtedly had gotten scoliosis as a teen in > rapid growth, and that the GH makes the rapid growth occur earlier. > > He also said that he wants to see her in 6 months -- if the degrees > have advanced, then we will talk about treatment options. But he > also warned us that for a child whose original xrays were 0 degrees, > then 5 degrees, and now 12, the chance of it continuing to advance > is greater than it stabilizing. Some kids are born with curved > spines, and they stay that same degree. > > We have SO many questions, and would love to hear from anyone whose > child has had spinal surgery for scoliosis. The doctor explained > that the latest very large studies (one just published from the > Netherlands) are really indicating surgery over bracing. > > is very sad, and promptly went up to her room to do > these " ball exercises " the doctor told her to do to " loosen her back > muscles. " > > Anyone with experience, let me know! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2005 Report Share Posted November 3, 2005 - Oh - please give a hug for us. We don't want her to be sad. I'm sure impressed with her take-charge attitude with the ball though - and you can tell her how proud of her I am that she is using such " mature " coping skills to deal with all of this information. How proud of her you must be. Also, please let her know (as I know you have - but, coming from me it might be different <grin>) that it's okay to be sad and that she has the most fabulous mother who will do all she can to see that she gets the best care. Hugs to her - thanks. As far as you are concerened - thanks for keeping us posted. I wish I had information for you - but, I have no clue about scoliosis. Certainly do appreciate the valuable information. - if there is anything we can do for you - please let us know. You are both in our thoughts. - Hugs - H > > Well, we just got home from our annual orthopedics checkup. I am > sure glad that we go every year! When was 5 years old, the > spinal x-ray was pretty normal, and then 8 years old, the x-rays > showed about a 5 degree curve, but he wasn't worried. > Unfortunately, 2 years later today, the xray was obviously a > backwards C, a 12 degree curve. > > He is the second in command at Children's Hospital, and he really > emphathized a couple things that he wanted me to tell of you. ANY > child with RSS/SGA who shows up with scoliosis should be seen and > treated by a " pediatric orthopedic surgeon who specialized in spinal > disorders. " He said that there are many peds endos who do broken > legs/arm type of stuff, and that the technology for treatment of > scoliosis and kyphosis is changing/advancing literally every month. > > He just got back last weekend from an International conference on > scoliosis. > > He did explain again that GH does not cause scoliosis, but rather > causes rapid growth in a child who is predisposed for scoliosis. > That the child would undoubtedly had gotten scoliosis as a teen in > rapid growth, and that the GH makes the rapid growth occur earlier. > > He also said that he wants to see her in 6 months -- if the degrees > have advanced, then we will talk about treatment options. But he > also warned us that for a child whose original xrays were 0 degrees, > then 5 degrees, and now 12, the chance of it continuing to advance > is greater than it stabilizing. Some kids are born with curved > spines, and they stay that same degree. > > We have SO many questions, and would love to hear from anyone whose > child has had spinal surgery for scoliosis. The doctor explained > that the latest very large studies (one just published from the > Netherlands) are really indicating surgery over bracing. > > is very sad, and promptly went up to her room to do > these " ball exercises " the doctor told her to do to " loosen her back > muscles. " > > Anyone with experience, let me know! > > > Quote Link to comment Share on other sites More sharing options...
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