Belle journée ... je suis la maman d'un petit garcon de 6 ans qui a appris ce vendredi qu'il était atteint du syndrome de l'hémiplégie alternante, après...
Rachel, Thank you so much. I will give this info to Jennie and have her subscribe from her email address at home. I really appreciate you doing this for the...
David, Isn't it great that another child was able to set up the group for the kids. Makes me feel a little dumb. Anyway, Jennie is, as I said, 14 years old....
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Dominique Poncelin
d.poncelin@...
Oct 29, 2001 3:02 pm
Hello My name is dominique Poncelin, I'm president of the french group for AHC with 31 french families having a child suffering from this affection. I've...
Hi Karen, WE dropped ALex by 15 mg every two weeks as well, and when we were down to the last 15 mg, we did it by half tablets. Alex has always had low tone...
Hi Carol, Thanks for the info, we were supposed to reduce Trevors meds again on Friday but he had some severe episodes so we are waiting a bit, we are taking...
Does anyone have experience with the use of migraine drugs such as Imitrex or other sumatriptan drugs to break the AHC attacks or induce sleep? I have seen...
Karen, My daughter was on Verapamil, which is another drug used for migraine type disorders, and we saw no difference. When we used it though we didn't have ...
Karen, We have used imitrex for migraines and valium to induce sleep to break the attacks. Since sleep really seems to be the best result for us we have had...
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Lynda Burnham
lynda.burnham@...
Oct 30, 2001 6:23 pm
Hello: I am very interested in reading all about weaning the children from pheno. In our case, it proved very to be very unsuccessful. Our daughter Leslie was...
Hi Karen, my name is Suzie and I remember the first time Michele now 4 had her full body paralysis ,it was so scary, she was sitting and the floor playing ,she...
Hi Everyone, Thanks for the replies, Suzie thanks for your thoughts I knew we would probably see the full body paralysis but it sure didn't make it any easier...
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Erik langevin
prof.kid@...
Oct 31, 2001 12:51 am
êtes-vous du Québec? Si oui, de quelle région? Nous sommes dans la même situation que vous et nous aimerions en savoir un peu plus sur votre situation et...
What criteria do you use to judge the severity of the attack and thus to use valium etal? I would consider Addie's paralysis event worthy of valium when it...
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Joan and Steve Law
6laws@...
Oct 31, 2001 1:40 pm
We tried Imitrex both the nasal spray and the injection at home without success. It did not shorten the episode nor did it seem to lessen the pain associated...
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MANEEXP@...
Oct 31, 2001 5:59 pm
Hi, thanks for the E mail, she sounds like Ashley in so many ways. Dressing she can do but often needs help, brushing teeth and sometimes eating through a full...
Hello. My name is ReBecca. My husband's name is Allen. My son's name is Craig, and his service dog's name, Prince. I am having an extremely difficult time...
Rebecca, Your son's episodes sound very much like episodes we have seen in the past with my daughter Jennie, age 14, including the one last Thanksgiving. In...
So I am not nuts in feeling like this is the first true diagnosis then! It is the first time I have ever felt peace with a diagnosis and I keep berating...
It really seems like all kids have different pieces of the disorder and different levels of those pieces, to answer your question I would have to say probably...
Has anyone here tried HBOT and got good results? We did a trial run for two tests and Craig got his left arm back for a good six weeks until another episode...
Karen, We have played with the valium dosage lots to find out what works for Trevor. I finally have come up with the following if his episode lasts more than...
HI Lynda, Thanks so much for your note about pheno. We are one of the families that took our son off pheno with mixed results. His attacks improved ...
We have not tried HBOT with our son Alex (4 years old) but he is in Conductive Education. He attends six hours a day, five days a week. I've seen amazing...
Oh how I agree. CE has done wonders for Craig. He walked the first year we went! We had a problem with the school system not acknowledging the issues with...
