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...
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...
Guest guest Posted June 5, 2004 Report Share Posted June 5, 2004 I think it makes more of a difference in understanding how to augment their hearing. Dylan has narrow canals, fused bones in the middle ear, bone between the middle and inner ears, an undeveloped cochlea, as well as the nerve loss, so his hearing is affected all the way through. That makes a difference on how we manage his hearing loss. From what I understand the docs who know CHARGE are tending to look at the undeveloped semi-circular canals as one of the major diagnostic criteria for CHARGE, so when babies are having their diagnostic work-ups the temporal lobe CT is a reasonable test to order in helping to come up with the diagnosis. For older kids who seem to be receiving benefit from their hearing aids, then maybe there is no point in going through it. Kim L > > 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...
Guest guest Posted June 5, 2004 Report Share Posted June 5, 2004 I think it makes more of a difference in understanding how to augment their hearing. Dylan has narrow canals, fused bones in the middle ear, bone between the middle and inner ears, an undeveloped cochlea, as well as the nerve loss, so his hearing is affected all the way through. That makes a difference on how we manage his hearing loss. From what I understand the docs who know CHARGE are tending to look at the undeveloped semi-circular canals as one of the major diagnostic criteria for CHARGE, so when babies are having their diagnostic work-ups the temporal lobe CT is a reasonable test to order in helping to come up with the diagnosis. For older kids who seem to be receiving benefit from their hearing aids, then maybe there is no point in going through it. Kim L > > 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...
Guest guest Posted June 6, 2004 Report Share Posted June 6, 2004 > > In a message dated 04/06/2004 23:19:31 GMT Standard Time, > michelledg33@y... 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 > > We agree with the anaesthectic risk, so we did it while he was asleep. The hospital was not very happy about our refusing to let them knock him out for a simply cat scan. ANother reason to have the cat scan is to check if the auditory nerve is healthy and attached to the brain as it should be. Randy husband to and Garlands poppy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2004 Report Share Posted June 6, 2004 > > In a message dated 04/06/2004 23:19:31 GMT Standard Time, > michelledg33@y... 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 > > We agree with the anaesthectic risk, so we did it while he was asleep. The hospital was not very happy about our refusing to let them knock him out for a simply cat scan. ANother reason to have the cat scan is to check if the auditory nerve is healthy and attached to the brain as it should be. Randy husband to and Garlands poppy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2004 Report Share Posted June 9, 2004 Hi to all. Just to throw in my two cents worth....my son has major sensory integration issues and we feel his lousy balance comes from this, as vestibular stuff can be effected by SID. Hope this helps in decision making. I would say for my son....the only way I would have the CT w/anesthesia to check semi-circular cannals would be if he had obvious hearing problems. Kim McKie mom to Will 23 months, CHARGe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2004 Report Share Posted June 9, 2004 Hi to all. Just to throw in my two cents worth....my son has major sensory integration issues and we feel his lousy balance comes from this, as vestibular stuff can be effected by SID. Hope this helps in decision making. I would say for my son....the only way I would have the CT w/anesthesia to check semi-circular cannals would be if he had obvious hearing problems. Kim McKie mom to Will 23 months, CHARGe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2004 Report Share Posted June 9, 2004 Hi to all. Just to throw in my two cents worth....my son has major sensory integration issues and we feel his lousy balance comes from this, as vestibular stuff can be effected by SID. Hope this helps in decision making. I would say for my son....the only way I would have the CT w/anesthesia to check semi-circular cannals would be if he had obvious hearing problems. Kim McKie mom to Will 23 months, CHARGe Quote Link to comment Share on other sites More sharing options...
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