Guest guest Posted November 1, 1998 Report Share Posted November 1, 1998 Janet wrote: I have a question on this issue (scoliosis). My pedi said that even if has scoliosis, there really isn't much they would do about it. What do the *experts* have to say about this comment? Hi Janet! We were told that it was important to follow this closely because a soft brace followed by a hard brace would help to slow the progression and at some point, surgery may be a possibility if the rotation progresses to 50-70 degrees. Scoliosis may be another reason why CHARGErs tend to be on the short side. 's teacher said that she had a couple classmates who were inches taller following surgery for scoliosis. The curvature may impair the lungs ability to expand and nerve function. We feel more comfortable now in the hands of a pediatric orthopedic surgeon who considers this a problem to be monitored than we did after seeing a different (local) pediatric orthopedic surgeon who did not find anything wrong or see a need to ever see him again. 's curvature is obvious on x-rays and mom noticed something not quite right about his shoulders when his clothes are off. This is not obvious with his clothes on at this point and yet he had a 20 degree rotation at age 2!!! Cheryl, , (5), (3, CHaRGE) Okemos, MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 1998 Report Share Posted November 2, 1998 Janet, I'm afraid I'm a little confused. All the children I have worked with who had scoliosis (some CHARGE, but mostly not) were all monitored closely at least every year, and some more often if progression was noted. Once the scoliosis reached a certain point (measured in degrees but I forget the cutoff point), the options were discussed re: surgeries, bracing etc. etc. Did your pedi tell you WHY they would't do anything for ? Consultant Deafblind Resource Services Ontario, CanadaAt 03:52 PM 11/1/98 EST, you wrote: >From: JPM4189@... > >Hi, > >I have a question on this issue (scoliosis). My pedi said that even if >has scoliosis, there really isn't much they would do about it. > >What do the *experts* have to say about this comment? > >Janet >Wife to Matt >Mom to & (CHaRGEr) 6 1/2, nne 19 months, and > Mom to 5 months, and 14 months. > >Weymouth, Massachusetts > >------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 1998 Report Share Posted November 5, 1998 Hi , Sorry it has taken me so long to answer. The pediatrician said that the *current* thinking is that once you stop bracing the child it goes right back the way it was. I am seeing him (the pedi) next week and will ask him to clarify. does not have any noticeable curving at this time. Although he has not been seen by an orthopedic doctor. Thanks for your concern. Janet Wife to Matt Mom to & (CHaRGEr) 6 1/2, nne 19 months, and Mom to 5 months, and 14 months. Weymouth, Massachusetts Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 1998 Report Share Posted November 5, 1998 Janet wrote: does not have any noticeable curving at this time. Although he has not been seen by an orthopedic doctor. Hi Janet! Our also does not have " noticeable curving " BUT he has a 20 degree rotation of his spine. I think that a pediatric orthopedic surgeon would be more familiar with their own specialty field than a pediatrician. 's teacher knew a student when she was in school who did not have noticeable curving of her spine, had surgery, and was noticeably 5 inches taller afterward! What's the harm in having an evaluation? Hopefully all will be well. Good luck! Cheryl, , (5), (3, CHaRGE) Okemos, MI Quote Link to comment Share on other sites More sharing options...
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