This message is in reply to Brenda and Wendy about respiratory disturbance in AHC. I'm Dominique , from France, president of the french group of families ...
dominique poncelin
d.poncelin@...
May 7, 2005 8:03 pm
3982
My daughter Hannah 2 1/2 yo has ahc and seizures. Her seizures was diagnosed about a year ago. And the AHC was diagnosed a few months after that. Her AH was...
Hi Hong this is Dave ashleys dad she is 16 now,it sounds to me like ahc,all of thos hcaracteristics fit the mold of our kids,and the two week period inbetween...
MANEEXP@...
May 10, 2005 1:05 pm
3984
Hi Hong, My daughter Addie is now 5 1/2 yrs old and is dx with AHC and seizures. She was not dx with AHC until 2 yrs old at which time she was put on...
Hi Hong, My daughter Mary (now 18)has had both seizures and AHC since she was a baby. My criteria for knowing the difference was her alertness and breathing....
Hi Hong, I don't think I answered your question completely. For us too the way we 'think'' we are distinguishing a seizure is a lack a responsiveness. THere...
Ashlynn, 2 years old, was diagnosed at 10 months old with AHC. At 3 months old she was diagnosed with seizures. When we got the AHC diagnosis, we started to...
Hi, My 3-year old daughter frequently moans in her sleep. She doesn't always wake up because of it, but it does seem to disturb her quality of sleep. It sounds...
HI, emily used to do that when she was worried about something comming up usually a school trip, and we found that a cup of Chamomile tea before bedtime...
Until my son was over 2 year's old, he was treated for epilepsy with pheno, tegretol, and a bunch more I forget. He never had seizures except when he became...
My son Nick was also diagnosed with a seizure disorder with his first episode at 25 hours old. He did start out with the phenobarbital, then moved on to...
To Jimmy"s mom, Mary does gave seizure activity on an EEG. The AHC episodes did not show up as seizures on the EEG, that was how she was originally diagnosed...
I think this constant ambiguity between appropriate testing, medication treatments, how our children present (paralysis/limpness, 'grandmal'/thrashing/seizure,...
quoted from JIMMYAHC " Has anyone else experienced this side of it? What can you do? The thing I always wonder about is does an EEG back up their statement? My...
Hi everyone! We are getting ready to switch Ashlynn, 2 years old, off of Flunarizine to either Neurontin or Acetazolamide. Flunarizine has pretty much...
I don't know about either of the meds you listed but I can tell you to wean her off the Flunarizine very, very slowly. Many years ago we were going to try...
Hi, Angela, If the Flunarizine used to work for Ashlynn, and is no longer effective, why don't you consider increasing the dosage? I can tell from our...
Hi, Angela. We started Hannah on the acetazolamide prior to the Flunarazine, due to couple reasons, low profile of side effects , easier to obtain. It reduced...
We increased Ashlynn's dosage as much as we can 2 1/2 months ago and have seen no improvement. We had hoped increasing would work, but it didn't, so now we...
Ashlynn has a G-Tube so we don't have to worry about yucky tasting medicine. She hated to take her Phenobarbital because it was yucky and then when we had the...
Hi Angela, We tried Neurontin with no success when Kathleen was about seven. We have also tried to wean Kathleen off of flunarizine twice and that was a...
How much does Ashlynn weigh and what is the dosage she is on? How do you know that you have increased it as much as you can? I'm really interested because I...
Ashlynn weighs 24 lbs. She is on 5mg everyday and an extra 5mg twice a week. She can be on up to 15 mg a day, but when we have tried to increase Ashlynn, she...
Cameron takes Acetazolamide and it seems to have decreased the severity of his episodes significantly. When we look at his log we are forced to admit symptoms...
PS---we have had zero negative side effects, so far as we can tell. Sparky <jamieangelasparks3@...> wrote:Ashlynn weighs 24 lbs. She is on 5mg everyday...
My family would very much like to attend. I believe this is a case where multiple attendees are an advantage, but want to clarify for myself. I expect to...
Hello Joanna, By all means, bring the whole family!!! We will be providing child care/sitting for all children during the meeting on Saturday and on Sunday...
Hello, Angela You probably know that Flunarazine is the calcium channel blocker which we have several other in the same class in U.S. They are verapamil, and...
Thank you all for your information!!! It is so nice that we can post our questions and know that others have answers to them. It definitely makes me feel not...
Angela, my son Mario is 3yrs and weights 27lbs. I too went through wanting to wean my child off flunarizine. I first increase the dose with no really success....
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