Guest guest Posted March 8, 2000 Report Share Posted March 8, 2000 << our first born a son had the same thing happen when he had his immunization shots as Carlene but his was worse and passed away at 11 months old for what reason we still don,t know my first question can or does this happen in cmt? well again hi everyone and i hope this is not to long but had to tell also is there any one else in the group from or near maine would like to talk to ya >> Hi Brad, and welcome, I'm sorry about your son. That would be very sad. I have never heard of CMT being adversely associated with immunization shots. Perhaps there is something else in the genetic makeup of your family that would account for all of your children having bad reactions. I doubt very much that it has anything to do with CMT. Some children who don't have CMT may also have bad reactions, but most children have no reaction from them. The immunizations are safe for the vast majority of infants - much safer than risking the diseases they prevent. If Carlene's test comes back negative for CMT X-linked, has she been tested for illnesses such as Friederich's Ataxia (or one of the other ataxias) or CMT type 3? Most types of CMT do not affect speech, at least not in a child, from my information. Only doctors who see her in person can really tell anything. There are many serious neurological disorders. Some CMT babies walk early, some late, and many are average. No pattern. Can Carlene use the computer for communication? Can she read very well? The closest CMTers to you that I know of are in Massachusetts and New Hampshire, but email cuts the distances way down. I frequently 'talk' with people from Europe and the UK, and from Australia or Canada, as well as from many USA states. I am not a medical person. Regards, Kat in Seattle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2000 Report Share Posted March 9, 2000 Hi, all!! On the subject of speech/language development in CMTers, I would like to also add that I am not sure if it is common in children with CMT but both my sister and I had VERY delayed speech development. We were both diagnosed at young ages (I was 3). I didn't start talking until age 3 1/2 and my sister was almost 5 before she started. We both had to undergo extensive speech and language therapy throughout elementary school, although today you could never tell that there was any type of a problem. The only reason I believe this is related to the CMT is that we have another sister without CMT who began speaking before she was 1. Thank you for listening to me, Devin Ann --- KathleenLS@... wrote: > > In a message dated 3/6/00 6:58:19 PM, > dwnestr@... writes: > > << our first born a son had the same thing happen > when he had his > immunization shots as Carlene but his was worse and > passed away at 11 months > old for what reason we still don,t know my first > question can or does this > happen in cmt? well again hi everyone and i hope > this is not to long but had > to tell also is there any one else in the group from > or near maine would like > to talk to ya >> > > Hi Brad, and welcome, > > I'm sorry about your son. That would be very sad. I > have never heard of CMT > being adversely associated with immunization shots. > Perhaps there is > something else in the genetic makeup of your family > that would account for > all of your children having bad reactions. I doubt > very much that it has > anything to do with CMT. Some children who don't > have CMT may also have bad > reactions, but most children have no reaction from > them. The immunizations > are safe for the vast majority of infants - much > safer than risking the > diseases they prevent. > > If Carlene's test comes back negative for CMT > X-linked, has she been tested > for illnesses such as Friederich's Ataxia (or one of > the other ataxias) or > CMT type 3? Most types of CMT do not affect speech, > at least not in a child, > from my information. Only doctors who see her in > person can really tell > anything. There are many serious neurological > disorders. > > Some CMT babies walk early, some late, and many are > average. No pattern. > > Can Carlene use the computer for communication? Can > she read very well? > > The closest CMTers to you that I know of are in > Massachusetts and New > Hampshire, but email cuts the distances way down. I > frequently 'talk' with > people from Europe and the UK, and from Australia or > Canada, as well as from > many USA states. > > I am not a medical person. > > Regards, > > Kat in Seattle > ===== Devin Ann son RevDev45@... (314)918-1153 " Faith manages! " --Babylon 5 __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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