This is Marcia, Jennie's (age 16) mom. We seem to be entering a new phase of AHC and I'm looking for any advise or confirmation that others have experienced...
Hi, this is Ashley's dad she is 14, soon to be 15. These attacks can u tell me when they come on, time of day, anything going on at home, any stress she may be...
MANEEXP@...
Nov 5, 2003 3:28 pm
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Dave, There does and doesn't seem to be a patter to her attacks. A couple of weeks ago I would have told you that the worse ones were coming on at night when...
Hi Marcia, Emily has been having full body episodes on a cyclical basis, around the moon cycles I have noticed for about a year now, she has always had spasms ...
Hi, Lee. I love the idea of yoga. My daughter, Alaina, is only 3.5 years old right now, so I don't know if it would be an option for us at this time, but,...
Jake, age 12, also is troubled by severe dystonia. For several years, it has been worse than the hemiplegia. A physical therapist showed us how to help him...
Hi, I was reading a message and someone said that they were using 100 mg chewable Co enzyme Q10 to counteract some side affects. My question is who is the...
Hi, Emily turned 11 this April, I think the hardest thing is to find a good class that has a balance of kids that work well together. We were lucky to have...
Hi, We use 60mg capsules of CoQ10 and have for several years. CoQ10 was recommended in 1995 as helping protect the brain against any possible damage in the...
Marcia, Have you tried administeringValium rectally? If not, you might want to talk to your doctor about it. The difference in oral and rectal administration...
Nandana Perera
nandanap@...
Nov 6, 2003 2:47 pm
2879
Hil all,yes sleep does help but how do we explain the spell that last several days,sleepp help for a short period but returns,When ash(14) was younger we used...
MANEEXP@...
Nov 6, 2003 3:36 pm
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Nandana, We enjoyed viewing the pictures of Vishwa. Thanks for putting them on the site. Becky:)...
Hi Lee, My daughter takes 100mg chewable coq10 enzyme-maplenut flavor. I get ours from a local homeopath but recently noticed our local health food store is ...
hi, me and Ash would also like to see pics of the children,how do i view them,Dave and Ash [Non-text portions of this message have been removed]...
MANEEXP@...
Nov 7, 2003 3:13 pm
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Karen wrote {I pay $26.50 per bottle of 30 chewables. SOme insurances will pay (with alot of pushing) because this enzyme is part of the mitochondrial...
Hi Joan, To my knowledge, AHC is not a mitochondrial disease. Over the years the medical community has thought that there may be a possible link based on some...
You have to go to the AFHA website http://groups.yahoo.com/group/afha then logon to the group (your logon can be your email address) If you can't remember...
Hi : David also used to have severe dystonia attacks, before we even knew he had ahc. He used to have them almost every day right after he awoke from his...
Hi This is Karen. I am not suggesting AHC is mitochondrial related in any way. It is my understanding that CoQ10 enzyme may help with basic cell metabolism or...
Joan, According to the research paper published by Prof. Jean Aicardi, the two other conditions often resemblling AHC are, mitichondrial disease and hemeplegic...
Nandana Perera
nandanap@...
Nov 11, 2003 1:55 pm
2889
Hi, After much trial and error(s) LOL, I have made a web site for Jake. If you would like to see it, please go to ...
Becky, the website is great!!! Kathleen and I just looked at it. Lynn ... Hi, After much trial and error(s) LOL, I have made a web site for Jake. If you...
Becky, I just looked at Jake's web site with Emily, she said "how cool, it's is awesome" She especially liked the picture of Jake holding the baby, She loves...
HI, I was wondering how many of you got the flu shot for your son/daughter affected with AHC? I had decided not to get it for Alaina since I don't want her to...
HI, THIS IS CARRIE, MOTHER OF HALEY AGE 11...WE HAVE GOTTEN A FLU SHOT FOR HALEY SINCE SHE WAS 4.SHE ONLY HAD PROBLEMS 1 TIME BUT THEY HAD GIVEN HER 2 OTHER...
Addie, 4 yrs, had her 1st flu shot this year. She gets the second booster in Dec (1st time flu shot receivers get the shot in two doses). I, too, am hoping...
We've given our son the flu shot for many years now with no ill effects. We were told that more people were having mild flu symptoms after the shot this year,...
Hi Jennifer, We just did the flu shot this year for the first time with Alex (6). He had his second shot last week and we've seen no side effects. We decided...
Hi, my name is mary, my son is tanner he is 16 now. I get him a flu shot each year. The doctors that he has over the years told us to get it. Jennifer &...
Hi all this is Dave Ashley's dad. She is 14 yrs old,Ive been watching her over the past few months and with school meetings and various people looking at ...
