Guest guest Posted October 6, 2006 Report Share Posted October 6, 2006 well we got the cat scan results today and mathew does not have or very little of the semi circular canal. no balance right? please i need info. he is six and does not walk but can crawl. he stands on his tip toes gives him no balance. need some direction. stacey mother of mathew6 (charger),rylie4. and cameron 19months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2006 Report Share Posted October 6, 2006 Stacey, Many of our kids have underdeveloped semi-circular canals and still do walk, so I hope that is encouraging. What kinds of therapy does your son receive? Does he receive Physical Therapy? Has he tried a walker from the rehab center or school? When he stands on his tip-toes, does he hold onto something like a table or chair, or does he stand independently this way? wendy need some help > well we got the cat scan results today and mathew does not have or very > little of the semi circular canal. no balance right? please i need info. > he is six > and does not walk but can crawl. he stands on his tip toes gives him no > balance. need some direction. stacey mother of mathew6 > (charger),rylie4. > and cameron 19months > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2006 Report Share Posted October 8, 2006 wendy the doc told us that he would not walk on his own. now that just makes mad he tolds us that like there was no hope. he has lots of support. he has pt at school, a walker, gate trainer, and a stander. he also does horse back riding once a week til nov. i guess a was hoping for mathew to catch a break. it ok he will over come. he always has. when he stands he pulls on anything he can. we got braces for his feet to make him stand flat, but as soon as they come off back to tip toes. he is so studden. lol not anything like me!!!! thanks for chatting with me about it. hope to chat agian. stacey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2006 Report Share Posted October 9, 2006 Marilyn he stands tip toe in shoes and barefoot. the only time he doesn't is in his braces, and as soon as they are off he is tip toe agian. i just don't know what to do. he did not have a trach. he had a cleft. stacey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2006 Report Share Posted October 9, 2006 Stacey: Just curious: Is this barefoot? One thing we were told was that due to tactile defensiveness, would try to walk without her big toes touching the floor. It corresponds to pressure points (acupuncture/acupressure) in your neck. had been trached and was very defensive about it. There were other parts of her feet, when walking barefoot, that she was particular about touching the floor too. These all corresponded to pressure points that connected to problems she had within her system related to CHARGE. Friends in CHARGE, Marilyn Ogan Mom of (14 yrs, CHARGE+ JRA) Mom of Ken (17 yrs, Asperger's) Wife of Rick oganm@... we got braces for his feet to make him stand flat, but as soon as they come off back to tip toes. stacey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2006 Report Share Posted October 9, 2006 Hi Stacey, I remember from a talk Brown gave that the tip toe thing was quite common to children with charge when they were learning to walk because it gives better propriceptive information to the muscles. He had the whole audience feel the difference in their calf muscles between standing flat footed and then compare it to standing tip toe. On tip toe you feel your calves so much more, and so he felt that tip toeing was one way the children were gaining from getting better messages back to their nerves. Hope you can make sense of this, I'm not too good at explaining what he meant, but I think his whole talk is somewhere on the www.sense.org.uk website if you want to read it. I wonder if inhibiting the tip toeing might make it harder for some children to learn to work, if they get better info from their nerves and muscles when they tip toe then we should allow/encourage it?? I know still occassionally tip toes but much less often as his walking has got more stable, but in the beginning when he was using a pushalong truck or his kaye walker he would tip toe loads. Now he walks independantly (but with a sort of drunken sway!) is (Mum to UK) > > Marilyn he stands tip toe in shoes and barefoot. the only time he > doesn't > is in his braces, and as soon as they are off he is tip toe agian. i just > don't know what to do. he did not have a trach. he had a cleft. stacey > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2006 Report Share Posted October 9, 2006 hmmmmmmmmmmmmmm very interesting alexis very interesting love u > > Hi Stacey, > > I remember from a talk Brown gave that the tip toe thing was quite > common to children with charge when they were learning to walk because it > gives better propriceptive information to the muscles. He had the whole > audience feel the difference in their calf muscles between standing flat > footed and then compare it to standing tip toe. On tip toe you feel your > calves so much more, and so he felt that tip toeing was one way the > children > were gaining from getting better messages back to their nerves. Hope you > can make sense of this, I'm not too good at explaining what he meant, but > I > think his whole talk is somewhere on the www.sense.org.uk website if you > want to read it. > I wonder if inhibiting the tip toeing might make it harder for some > children > to learn to work, if they get better info from their nerves and muscles > when > they tip toe then we should allow/encourage it?? I know still > occassionally tip toes but much less often as his walking has got more > stable, but in the beginning when he was using a pushalong truck or his > kaye > walker he would tip toe loads. > Now he walks independantly (but with a sort of drunken sway!) > is (Mum to UK) > > On 10/9/06, uspacey@... <uspacey%40aol.com> <uspacey@...<uspacey%40aol.com>> > wrote: > > > > Marilyn he stands tip toe in shoes and barefoot. the only time he > > doesn't > > is in his braces, and as soon as they are off he is tip toe agian. i > just > > don't know what to do. he did not have a trach. he had a cleft. stacey > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2006 Report Share Posted October 9, 2006 I haven't read the earlier strand of these messages but I just wanted to say that my CHARGEr, , started walking when she was 4 and I never saw it coming! These kids do what they want when they want and they prove people wrong all the time! Lori Myers Spouse - Trent, Children - (9), (6, CHARGE Syndrome, Congenital Heart Defects/TOF Pulmonary Atresia/repaired, ECMO 12 days, Bi-lateral Choanal Atresia, Decanullated Trach, G-button, partial hearing loss, walking as of 12/22/04!, and Emma (3) Dallas, Texas Re: need some help wendy the doc told us that he would not walk on his own. now that just makes mad he tolds us that like there was no hope. he has lots of support. he has pt at school, a walker, gate trainer, and a stander. he also does horse back riding once a week til nov. i guess a was hoping for mathew to catch a break. it ok he will over come. he always has. when he stands he pulls on anything he can. we got braces for his feet to make him stand flat, but as soon as they come off back to tip toes. he is so studden. lol not anything like me!!!! thanks for chatting with me about it. hope to chat agian. stacey Quote Link to comment Share on other sites More sharing options...
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