Guest guest Posted May 31, 2004 Report Share Posted May 31, 2004 Thanks for the information. I will try that with this week. and balance Arlin and Jodi, My son is 2 1/2 and is walking around the house without his walker. In the last month he has realized that if he spreads his feet apart he can walk without any help. I have noticed with my son that he will observe how to do something and when he thinks he can do it correctly he does it. I am not sure if this is the same with all CHARGErs, but he is smart enough to know if he can do something with out getting hurt, he does it. Garland is also missing both his semi- circular canals, which means he needs to learn how to compensate for the lack of balance. He also has bilateral colobomas in both eyes, so his vision is horible. He is very smart and has learned how to compensate for lack of balance and vision. , mama to Garland 2 1/2 Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2004 Report Share Posted May 31, 2004 hi just curious about how you found out the semi-circular canals were missing? what sort of test spots that? ds Josh is balancing not too badly, hard for me too assess what it is that makes him fall over himself while crawling along - was it the balance or low tone :0) he is keen to get walking on his feet and gets around furniture ok - execpt the pysio reckoned he was really using controlled leaning to stand up there rather than actually standing there :0) he loves pushing things around the floor, has a toy bus that has a handle on the top which lends itself to this activity really well, and this morning he had the bus in one hand and a truck in the other and was pushing both along following on his knees :0) Jo ds Ben 5yrs, ds Josh 21mths ----- Original Message ----- , Garland is also missing both his semi- > circular canals, which means he needs to learn how to compensate for > the lack of balance Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2004 Report Share Posted May 31, 2004 Dylan literally walked on his knees, back straight up, pushing a toy dump truck in front of himself for balance. The undeveloped semi-circular canals are very common in CHARGE. They are found by a temporal lobe CT scan. Kim > hi > just curious about how you found out the semi-circular canals were missing? > what sort of test spots that? ds Josh is balancing not too badly, hard for > me too assess what it is that makes him fall over himself while crawling > along - was it the balance or low tone :0) he is keen to get walking on his > feet and gets around furniture ok - execpt the pysio reckoned he was really > using controlled leaning to stand up there rather than actually standing > there :0) > > he loves pushing things around the floor, has a toy bus that has a handle on > the top which lends itself to this activity really well, and this morning he > had the bus in one hand and a truck in the other and was pushing both along > following on his knees :0) > > Jo > ds Ben 5yrs, ds Josh 21mths > > > ----- Original Message ----- > > , > Garland is also missing both his semi- >> circular canals, which means he needs to learn how to compensate for >> the lack of balance > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2004 Report Share Posted May 31, 2004 hi Kim, thanks for that, i remember you writing something about Dylan pushing the dump truck along like that - and then in comes Josh doing something very similar - such a coincidence :0) ... i don't think josh's back was that straight, but, he was trying! did it make any difference knowing about the canals, any difference to the type of therapy or anything? it seems like Josh's last ENT didn't think that actually knowing what everything looked like in there made any particular difference to treatment and so we didn't pursue any more tests ... we have just moved so i guess its an extreme way to get a whole heap of second opinions ;0) Jo ds Ben 5yrs, ds Josh 21 mths South Island, New Zealand ----- Original Message ----- > Dylan literally walked on his knees, back straight up, pushing a toy dump > truck in front of himself for balance. > > The undeveloped semi-circular canals are very common in CHARGE. They are > found by a temporal lobe CT scan. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2004 Report Share Posted May 31, 2004 hi Kim, thanks for that, i remember you writing something about Dylan pushing the dump truck along like that - and then in comes Josh doing something very similar - such a coincidence :0) ... i don't think josh's back was that straight, but, he was trying! did it make any difference knowing about the canals, any difference to the type of therapy or anything? it seems like Josh's last ENT didn't think that actually knowing what everything looked like in there made any particular difference to treatment and so we didn't pursue any more tests ... we have just moved so i guess its an extreme way to get a whole heap of second opinions ;0) Jo ds Ben 5yrs, ds Josh 21 mths South Island, New Zealand ----- Original Message ----- > Dylan literally walked on his knees, back straight up, pushing a toy dump > truck in front of himself for balance. > > The undeveloped semi-circular canals are very common in CHARGE. They are > found by a temporal lobe CT scan. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2004 Report Share Posted May 31, 2004 hi Kim, thanks for that, i remember you writing something about Dylan pushing the dump truck along like that - and then in comes Josh doing something very similar - such a coincidence :0) ... i don't think josh's back was that straight, but, he was trying! did it make any difference knowing about the canals, any difference to the type of therapy or anything? it seems like Josh's last ENT didn't think that actually knowing what everything looked like in there made any particular difference to treatment and so we didn't pursue any more tests ... we have just moved so i guess its an extreme way to get a whole heap of second opinions ;0) Jo ds Ben 5yrs, ds Josh 21 mths South Island, New Zealand ----- Original Message ----- > Dylan literally walked on his knees, back straight up, pushing a toy dump > truck in front of himself for balance. > > The undeveloped semi-circular canals are very common in CHARGE. They are > found by a temporal lobe CT scan. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2004 Report Share Posted May 31, 2004 hi Jody, sounds like our two are doing similar things at the moment! - don't you hate that 'thud' as his head hits the ground when the arm folds underneath?! *ouch* - especially if he's crawling over concrete!! I'd be interested if you find out anything related to the arm thing ... Jo ds Ben 5yrs, ds Josh 21 mths ----- Original Message ----- > - I agree with all that you wrote. And as Jo said with Josh, Ethan too will be crawling and then his arm will collapse for no apparant reason. Ethan is having a CT scan of temporal lobes next month, so hopefully this will tell us more about his balance. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2004 Report Share Posted May 31, 2004 hi Jody, sounds like our two are doing similar things at the moment! - don't you hate that 'thud' as his head hits the ground when the arm folds underneath?! *ouch* - especially if he's crawling over concrete!! I'd be interested if you find out anything related to the arm thing ... Jo ds Ben 5yrs, ds Josh 21 mths ----- Original Message ----- > - I agree with all that you wrote. And as Jo said with Josh, Ethan too will be crawling and then his arm will collapse for no apparant reason. Ethan is having a CT scan of temporal lobes next month, so hopefully this will tell us more about his balance. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2004 Report Share Posted May 31, 2004 hi Jody, sounds like our two are doing similar things at the moment! - don't you hate that 'thud' as his head hits the ground when the arm folds underneath?! *ouch* - especially if he's crawling over concrete!! I'd be interested if you find out anything related to the arm thing ... Jo ds Ben 5yrs, ds Josh 21 mths ----- Original Message ----- > - I agree with all that you wrote. And as Jo said with Josh, Ethan too will be crawling and then his arm will collapse for no apparant reason. Ethan is having a CT scan of temporal lobes next month, so hopefully this will tell us more about his balance. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2004 Report Share Posted May 31, 2004 hi Kim, are you able to tell me more about the torticollis? ... i just googled it and it doesn't sound like Josh has that ... he does seem to have a stiff neck sometimes, but, now that i think about it more in the past ... i remember asking somebody about it and was shrugged off ... mmmm, which specialty does it come under? it doesn't sound like the type of thing that would be intermittent ... fingers crossed :0) Jo ds Ben, ds Josh ----- Original Message ----- > We found that Dylan's arm giving out like that was due to his torticollis > rather than weakness or low tone like we first thought. Kim L > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2004 Report Share Posted May 31, 2004 hi Kim, are you able to tell me more about the torticollis? ... i just googled it and it doesn't sound like Josh has that ... he does seem to have a stiff neck sometimes, but, now that i think about it more in the past ... i remember asking somebody about it and was shrugged off ... mmmm, which specialty does it come under? it doesn't sound like the type of thing that would be intermittent ... fingers crossed :0) Jo ds Ben, ds Josh ----- Original Message ----- > We found that Dylan's arm giving out like that was due to his torticollis > rather than weakness or low tone like we first thought. Kim L > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2004 Report Share Posted May 31, 2004 hi Kim, are you able to tell me more about the torticollis? ... i just googled it and it doesn't sound like Josh has that ... he does seem to have a stiff neck sometimes, but, now that i think about it more in the past ... i remember asking somebody about it and was shrugged off ... mmmm, which specialty does it come under? it doesn't sound like the type of thing that would be intermittent ... fingers crossed :0) Jo ds Ben, ds Josh ----- Original Message ----- > We found that Dylan's arm giving out like that was due to his torticollis > rather than weakness or low tone like we first thought. Kim L > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 I had to fight to get Dylan's CT scan, because the doc believed that it would not change treatment options. Dylan had near continuous feedback with his hearing aids, even with getting new molds made again and again. I felt we needed to have a better idea of what his conductive loss was from instead of just knowing he was deaf. It turns out that he has so many things wrong with his hearing system that hearing aides were pointless. For one thing bone blocked the opening between the middle and inner ears, so the sound that went in bounced right back out; no wonder he always had feedback. (now days I wonder if they would have tried a BAHA inplant on him?????) We also discovered the undeveloped semi-circular canals. It changes his therapists perceptions; such as they know he needs SI therapy, but they don't expect his sensory issues to resolve in the same way as other kids. Kim > hi Kim, > thanks for that, i remember you writing something about Dylan pushing the > dump truck along like that - and then in comes Josh doing something very > similar - such a coincidence :0) ... i don't think josh's back was that > straight, but, he was trying! > > did it make any difference knowing about the canals, any difference to the > type of therapy or anything? it seems like Josh's last ENT didn't think that > actually knowing what everything looked like in there made any particular > difference to treatment and so we didn't pursue any more tests ... we have > just moved so i guess its an extreme way to get a whole heap of second > opinions ;0) > > Jo > ds Ben 5yrs, ds Josh 21 mths > South Island, New Zealand > > ----- Original Message ----- > > >> Dylan literally walked on his knees, back straight up, pushing a toy dump >> truck in front of himself for balance. >> >> The undeveloped semi-circular canals are very common in CHARGE. They are >> found by a temporal lobe CT scan. >> > > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 I had to fight to get Dylan's CT scan, because the doc believed that it would not change treatment options. Dylan had near continuous feedback with his hearing aids, even with getting new molds made again and again. I felt we needed to have a better idea of what his conductive loss was from instead of just knowing he was deaf. It turns out that he has so many things wrong with his hearing system that hearing aides were pointless. For one thing bone blocked the opening between the middle and inner ears, so the sound that went in bounced right back out; no wonder he always had feedback. (now days I wonder if they would have tried a BAHA inplant on him?????) We also discovered the undeveloped semi-circular canals. It changes his therapists perceptions; such as they know he needs SI therapy, but they don't expect his sensory issues to resolve in the same way as other kids. Kim > hi Kim, > thanks for that, i remember you writing something about Dylan pushing the > dump truck along like that - and then in comes Josh doing something very > similar - such a coincidence :0) ... i don't think josh's back was that > straight, but, he was trying! > > did it make any difference knowing about the canals, any difference to the > type of therapy or anything? it seems like Josh's last ENT didn't think that > actually knowing what everything looked like in there made any particular > difference to treatment and so we didn't pursue any more tests ... we have > just moved so i guess its an extreme way to get a whole heap of second > opinions ;0) > > Jo > ds Ben 5yrs, ds Josh 21 mths > South Island, New Zealand > > ----- Original Message ----- > > >> Dylan literally walked on his knees, back straight up, pushing a toy dump >> truck in front of himself for balance. >> >> The undeveloped semi-circular canals are very common in CHARGE. They are >> found by a temporal lobe CT scan. >> > > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 I had to fight to get Dylan's CT scan, because the doc believed that it would not change treatment options. Dylan had near continuous feedback with his hearing aids, even with getting new molds made again and again. I felt we needed to have a better idea of what his conductive loss was from instead of just knowing he was deaf. It turns out that he has so many things wrong with his hearing system that hearing aides were pointless. For one thing bone blocked the opening between the middle and inner ears, so the sound that went in bounced right back out; no wonder he always had feedback. (now days I wonder if they would have tried a BAHA inplant on him?????) We also discovered the undeveloped semi-circular canals. It changes his therapists perceptions; such as they know he needs SI therapy, but they don't expect his sensory issues to resolve in the same way as other kids. Kim > hi Kim, > thanks for that, i remember you writing something about Dylan pushing the > dump truck along like that - and then in comes Josh doing something very > similar - such a coincidence :0) ... i don't think josh's back was that > straight, but, he was trying! > > did it make any difference knowing about the canals, any difference to the > type of therapy or anything? it seems like Josh's last ENT didn't think that > actually knowing what everything looked like in there made any particular > difference to treatment and so we didn't pursue any more tests ... we have > just moved so i guess its an extreme way to get a whole heap of second > opinions ;0) > > Jo > ds Ben 5yrs, ds Josh 21 mths > South Island, New Zealand > > ----- Original Message ----- > > >> Dylan literally walked on his knees, back straight up, pushing a toy dump >> truck in front of himself for balance. >> >> The undeveloped semi-circular canals are very common in CHARGE. They are >> found by a temporal lobe CT scan. >> > > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 Dylan's thuds were often followed by a " seizure-like " episode. I was very glad when he was able to walk and the arm giving out was no longer an issue. Kim L > hi Jody, > sounds like our two are doing similar things at the moment! - don't you hate > that 'thud' as his head hits the ground when the arm folds underneath?! > *ouch* - especially if he's crawling over concrete!! > > I'd be interested if you find out anything related to the arm thing ... > > Jo > ds Ben 5yrs, ds Josh 21 mths > > ----- Original Message ----- > > >> - I agree with all that you wrote. And as Jo said with Josh, > Ethan too will be crawling and then his arm will collapse for no apparant > reason. Ethan is having a CT scan of temporal lobes next month, so > hopefully this will tell us more about his balance. > > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 Dylan's thuds were often followed by a " seizure-like " episode. I was very glad when he was able to walk and the arm giving out was no longer an issue. Kim L > hi Jody, > sounds like our two are doing similar things at the moment! - don't you hate > that 'thud' as his head hits the ground when the arm folds underneath?! > *ouch* - especially if he's crawling over concrete!! > > I'd be interested if you find out anything related to the arm thing ... > > Jo > ds Ben 5yrs, ds Josh 21 mths > > ----- Original Message ----- > > >> - I agree with all that you wrote. And as Jo said with Josh, > Ethan too will be crawling and then his arm will collapse for no apparant > reason. Ethan is having a CT scan of temporal lobes next month, so > hopefully this will tell us more about his balance. > > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 Dylan's thuds were often followed by a " seizure-like " episode. I was very glad when he was able to walk and the arm giving out was no longer an issue. Kim L > hi Jody, > sounds like our two are doing similar things at the moment! - don't you hate > that 'thud' as his head hits the ground when the arm folds underneath?! > *ouch* - especially if he's crawling over concrete!! > > I'd be interested if you find out anything related to the arm thing ... > > Jo > ds Ben 5yrs, ds Josh 21 mths > > ----- Original Message ----- > > >> - I agree with all that you wrote. And as Jo said with Josh, > Ethan too will be crawling and then his arm will collapse for no apparant > reason. Ethan is having a CT scan of temporal lobes next month, so > hopefully this will tell us more about his balance. > > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 Dylan's torticollis was evident from birth. He rarely moved in utero, he was in the same position so long that the chin on one side was atrophied, from the shoulder resting there. Needless to say he was born with a very tight neck. He mainly kept his head to one side and he cried out in pain when I would lift his arm to put his t-shirt on. Otherwise he never cried. It was very clearly pain in that position. He did have x-rays to make sure there were none of the orthopedic problems that have been mentioned here lately. The torticollis is the main reason we started the cranial-sacral; his OT recommended it. It seems you would know if it was a problem with Josh. Kim > hi Kim, > are you able to tell me more about the torticollis? ... i just googled it > and it doesn't sound like Josh has that ... he does seem to have a stiff > neck sometimes, but, now that i think about it more in the past ... i > remember asking somebody about it and was shrugged off ... mmmm, which > specialty does it come under? it doesn't sound like the type of thing that > would be intermittent ... fingers crossed :0) > > Jo > ds Ben, ds Josh > > ----- Original Message ----- > > >> We found that Dylan's arm giving out like that was due to his torticollis >> rather than weakness or low tone like we first thought. Kim L >> > > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 Dylan's torticollis was evident from birth. He rarely moved in utero, he was in the same position so long that the chin on one side was atrophied, from the shoulder resting there. Needless to say he was born with a very tight neck. He mainly kept his head to one side and he cried out in pain when I would lift his arm to put his t-shirt on. Otherwise he never cried. It was very clearly pain in that position. He did have x-rays to make sure there were none of the orthopedic problems that have been mentioned here lately. The torticollis is the main reason we started the cranial-sacral; his OT recommended it. It seems you would know if it was a problem with Josh. Kim > hi Kim, > are you able to tell me more about the torticollis? ... i just googled it > and it doesn't sound like Josh has that ... he does seem to have a stiff > neck sometimes, but, now that i think about it more in the past ... i > remember asking somebody about it and was shrugged off ... mmmm, which > specialty does it come under? it doesn't sound like the type of thing that > would be intermittent ... fingers crossed :0) > > Jo > ds Ben, ds Josh > > ----- Original Message ----- > > >> We found that Dylan's arm giving out like that was due to his torticollis >> rather than weakness or low tone like we first thought. Kim L >> > > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 Hi, Jack had a CT scan when he was around 18mths old. It showed that he does have semi-circular canals however it is clear that he has balance problems. He did not walk till he was 4yrs4mths and is still wobbly at times. He walks with the usual wide legged gait. I think that even though the semicircular canals are present they are not functioning properly so I think a CT scan to look specifically at the semicircular canal is probably not relevant. Does that make sense? Elaine, mum to Elise (12yrs) & Jack (6yrs) CHaRGE Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 Hi, Jack had a CT scan when he was around 18mths old. It showed that he does have semi-circular canals however it is clear that he has balance problems. He did not walk till he was 4yrs4mths and is still wobbly at times. He walks with the usual wide legged gait. I think that even though the semicircular canals are present they are not functioning properly so I think a CT scan to look specifically at the semicircular canal is probably not relevant. Does that make sense? Elaine, mum to Elise (12yrs) & Jack (6yrs) CHaRGE Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2004 Report Share Posted June 4, 2004 Hi Jody, somehow Josh doesn't get his lip very often ... he had a cleft lip and i think he is very protective of it - so consequently his forehead gets most of the bruises!! roll on walking :0) Jo ds Ben, ds Josh ----- Original Message ----- > Jo - Ethan does look quite battered and we have had a lot of lip bleeding. I can't wait to see how many injuries he has once he is up on his feet and walking!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2004 Report Share Posted June 4, 2004 hi Elaine, that does make sense ... i think it would be interesting to know what was happening in there with Josh's balance, but, its obviously not going to change much in how he manages his balancing :0) Jo ----- Original Message ----- > I think that even though the semicircular canals are present they are not > functioning properly so I think a CT scan to look specifically at the > semicircular canal is probably not relevant. > Does that make sense? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2004 Report Share Posted June 5, 2004 In a message dated 04/06/2004 23:19:31 GMT Standard Time, michelledg33@... writes: The CT Scan will not just look for the canals, but it will also show if they are narrow. If the canals are narrow it will make it difficult for them to work properly. I would strongly suggest to all CHARGE parents to get this CT done so you DO know what is or is not in the inner and outer ear. This can only assist you, as far as knowing where to go from there. , mama to Garland Hi, I understand what you are saying but is it worth putting a child through an anaesthetic simply to check if they have semicircular canals (normal or abnormal) or not? They go through enough as it is. Fair enough if they are having a CT for something else then it is worthwhile having the semicircular canals checked but not simply for that purpose. I think if you presume that they are absent or not working properly then you can work on the balance issues from an early age. I do not know of any CHARGE kids who don't have balance problems but there may be some out there. I know my son does have semicircular canals but he most definitely has major balance problems but has learned to adapt. Elaine, mum to Elise (12yrs) & Jack (6yrs) CHaRGE Scotland Quote Link to comment Share on other sites More sharing options...
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