Guest guest Posted March 30, 2000 Report Share Posted March 30, 2000 Hi Deepta, Our Daughter, ,is 15 and she has always held her head to one side to see better. She does have scoliosis for which she wears a brace at night but her shoulders are fine and her neck is a bit " webbed " but she does fine with it. The orthopeadist reports that with her back brace on her back looks fine in the x-ray and he does not foresee surgery. Scoliosis can be a CHARGE problem,however,remember that all of these kids are individual! I think it is helpful to take each thing one step at a time! Best wishes! Jackie Kenley, Mom to 21, nah 17 and the CHARGE lady 15 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2000 Report Share Posted March 30, 2000 , That is absolutely amazing. Ali has done " self therapies " herself. Her balance was just horrible, It was hard enough to walk on level ground for her, but she kept picking herself up and moving on. I will never forget the time we went for a walk in the park and there was a hill that had an incline. She didn't want to walk on the sidewalk, but she spent over an hour walking up and down that silly hill. She fell so many times, but she would get right back up and keep going. UP and Down. That is when I truly saw how determined she was. Bass Mom of Robby(10), (8) and *ALI*(7) Wife of Scio, Oregon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2000 Report Share Posted March 31, 2000 Deepta, When Jillian was born, they noted a webbed neck and now that she's 2, I describe her neck to people as a " Down Syndrome neck " , because that's what her neck looks like. But the tilting of the head could be due to a torticollis. Jillian had a pretty sever torticollis that at the CHARGE Syndrome conference in Houston Texas, the geneticist there ( Graham I think) siad she would probably have to have surgery to lenghten the muscle when she was about 6 years old. I cam ehome and told her physical therapist to prove him wrong and she said she was sorry to say but she had to agree with him... Well guess what??!! She has no more torticollis !!!!!!!!! Want to know how it got fixed?? I believe it was her guardian angel !!! Here is what happened...... I lay in bed thinking of what to do with Jillian's problems and one night I thought of this and I asked the PT if I could lay Jillian on her tummy with her head truned to the side she never turned it to when she was in a deep sleep and that would give her a long slow stretch... She said it sounded good, but she thought Jillian wold resist because at that time, she did not like being on her tummy, so that night I went into her room and she was not only already in the position I suggested but her little butt was staright up in the air and it caused a more intense stretch. And again the next night and so on and so on... She fixed it herself and as I said I believe it was her little guardian angel because nobody did but herself....The PT has a picture of Jillian sleeping in that position in her office. Foley Mom to 4 1/2, (CHARGE guy in heaven) and Jillian 2 w/cHaRGE Webbing of neck > Hi, > I was just reading through your post when the last statement made me > jump. Amita (16 mos) holds her head tilted and her neck took long > time to stabilize. Now, I was told that this is a visual problem. > Since her one eye has better vision than the other, the doctors and > the PT never considered other possibilities. She still does it, but > she does seems to have full range of neck motion. I mean she does > turn her neck both ways. Is the webbing and the spinal problem > connected? I read that you thought that the webbing started when she > was a baby. If I want to have this checked out do I take her to an > orthopedist? > Please reply. > Deepta > > > ------------------------------------------------------------------------ > PERFORM CPR ON YOUR APR! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > http://click./1/2121/1/_/22564/_/954428913/ > ------------------------------------------------------------------------ > > For information about the CHARGE Syndrome > Foundation or to become a member please > contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2000 Report Share Posted March 31, 2000 - I never really thought about it before, but this is what all children do. They learn thru play. They " practice " challenging experiences and skills over and over in their play until they master it. It can be a kid who plays doctor in order to make sense of that experience or a kid who loves to cut with scissors until they master it. Our special kids make all the things that kids do seem so amazing. By watching Aubrie overcome challenges, I've learned so much about how a typical body works and how amazing it is that things usually work so well. Watching her learn has made it even more clear how everybody learns. It's just more obvious in her. Maybe because it happens more slowly and deliberately, I don't know. Michele W mom to Aubrie (CHaRgE) 28 mos and (8 yrs), wife to DJ, in IL west@... shellybass@... wrote: > , > That is absolutely amazing. Ali has done " self therapies " herself. Her > balance was just horrible, It was hard enough to walk on level ground for > her, but she kept picking herself up and moving on. I will never forget > the time we went for a walk in the park and there was a hill that had an > incline. She didn't want to walk on the sidewalk, but she spent over an > hour walking up and down that silly hill. She fell so many times, but she > would get right back up and keep going. UP and Down. That is when I > truly saw how determined she was. > > Bass > Mom of Robby(10), (8) and *ALI*(7) > Wife of > Scio, Oregon > > ------------------------------------------------------------------------ > DON'T HATE YOUR RATE! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > http://click./1/2120/1/_/22564/_/954471748/ > ------------------------------------------------------------------------ > > For information about the CHARGE Syndrome > Foundation or to become a member please > contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2000 Report Share Posted March 31, 2000 , You know what!! That exercise was exactly what we used to do for Amita when she was 2-3 mos old and the tilting was severe. As time progressed and the sleep apnea/obstruction due to the vascular ring became severe, I guess that became paramount in our mind and we just plain forgot about this tummy exercise. Well, thanks for reminding me and guess how Amita is going to sleep tonight. Deepta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2000 Report Share Posted March 31, 2000 W, You are so right about kids and their " self learning " . My kids constantly amaze me. All three of them and they each have their own strengths and weaknesses. I think that the reason Ali's really stand out is because the things that she " makes " herself better at are things that we take for granted. And also they are goals that generally come much easier for others. I just seems that our Chargers have to have something " special " to overcome all their obstacles. Ali just has a " drive " . I to have learned so much on how the body works and I continue to learn. Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2000 Report Share Posted April 1, 2000 In a message dated 31/03/00 04:25:49 GMT Daylight Time, west@... writes: << never really thought about it before, but this is what all children do. They learn thru play. They " practice " challenging experiences and skills over and over in their play until they master it. It can be a kid who plays doctor in order to make sense of that experience or a kid who loves to cut with scissors until they master it. Our special kids make all the things that kids do seem so amazing. By watching Aubrie overcome challenges, I've learned so much about how a typical body works and how amazing it is that things usually work so well. Watching her learn has made it even more clear how everybody learns. >> Michele, I was just saying the very same thing to Jack's VI teacher this morning!!! Amazing, I don't think I ever really appreciated how my older daughter developed all the skills she needed to lead a normal life. I just took it all for granted. I don't with Jack and he never ceases to amaze me. Elaine mum to Elise (7yrs) & Jack(2.5yrs) CHaRGE Dumfries,Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2000 Report Share Posted April 2, 2000 Deepta, The webbing of the neck is a CHARGE characteristic. I am almost positive that it is because of the vision. BUT the Klippel-Feil also has to do with it for Patty. She has fusion of C2 and C3 -the spinal bones in her spinal column. Those are in her neck. She has pretty good range of motion but not total and as she gets older it lessens. Add to that her shoulder blade is placed too high and that increases the webbing also. Patty did not get scoliosis until she was around 8, I think, so there was nothing we could have seen there. When she did we had physical therapy and did horse back riding. They said if she got to 20 percent they would brace her. She stopped at 18 percent. You have to remember we did not look into many things when she was younger because she did not have the CHARGE diagnosis till she was 13. We didn't know what to look at. We just dealt with problems as they existed or occurred and did not look further. It is an Orthopedic Specialist who we go to for the shoulder and spinal problem. If you have insurance and want it looked at, why not. It might be good to get a baseline of the development and placement of the bones. But the danger also is the amount of x-rays you want your children to have. Talk to you doctor. Bonnie, Mom to Patty CHARGE 15, Kris 17, and wife to Quote Link to comment Share on other sites More sharing options...
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