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Alexander disease (AxD) - Parents
has anybody found useful info
- By HARLEYSPARENTS · New reply November 1, 2009
- 18 replies
- hi. our son harley is 8 months old have just spent the last 10 weeks in hospital with him having seizures, was inshubated 3 times due to having prolonged seizures. he then started having vacant episodes ...
got the diagnosis
- By HARLEYSPARENTS · Posted October 29, 2009
- 0 replies
- our baby boy harley is 1 in 2 weeks, it all started when he was 5 1/2 months, all the tests and stress and finally he has been confirmed of having a rare mutation gene of alexanders disease. been told ...
reflux
- By HARLEYSPARENTS · New reply October 26, 2009
- 1 reply
- could anybody give there exeriences with reflux. our son pulls a grimising face and brings up clear fluid (acid)is taking ranitidine(zantac) was on 1.3mls twice a day. when he brings the acid up he goes ...
Deterioration of cognitive functions -
- By gaby018 · New reply October 22, 2009
- 4 replies
- My brother (16yrl old) has Alexander Disease - Juvenile form. Although we know there's no actual treatment our biggest concern at this point is the deterioration of his cognitive functions... it seems ...
TRH therapy for Alexander Disease?
- By gaby018 · New reply October 20, 2009
- 5 replies
- Hi Everybody! I wanted to check if anybody had any experience with TRH (thyrotropin releasing hormone) therapy for alexander disease? Any input will be greatly appreciated. The doctor of my brother -that ...
Alexander Diesase - Juvenile
- By gaby018 · New reply October 7, 2009
- 15 replies
- Hi! My name is Gaby and I have a wonderful brother (16 years old) just diagnosed with Alexander Juvenile. My parents knew something was wrong with my brother since he was 9 yrs old. He was misdiagnosed ...
Girls with Alexander 's disease
- By 2001mom · New reply September 28, 2009
- 3 replies
- I have meet many boys with alexander's disease ,but i know of no other girls. My daughter , Hailey , is 8 and would like to meet another girl with the disease. She can still talk and is mentally like ...
Alexander's Disease
- By mason5852 · New reply August 22, 2009
- 1 reply
- My husband and I just found out today that our five year old daughter "officially" has Alexander's Disease. She has been diagnosed with a Leukodystrophy since 2008 and has had several blood tests done ...
siezures
- By HARLEYSPARENTS · New reply August 19, 2009
- 2 replies
- hello everbody. has anybody experienced REFLEX ANOXIC ATTACKS in any leukodystrophy ...
My name is Richard , My grandson got Alexander Disease.
- By hudels2 · New reply August 4, 2009
- 2 replies
- My grandson got Alexander Disease.And he is 2 years old. we just found out it last night.Please let me now more on this.Cant anyone let me and my wife now more about this disease. We are not good on a ...
Lecithin
- By Dexter · New reply July 29, 2009
- 11 replies
- I've read that lecithin is a key ingredient with myelin formation. I recently bought "liquid" lecithin derived from soy-beans and have been giving approximately 1tsp to our son who has Alexander's Disease ...
Heat and AlxD
- By Jelte · New reply July 7, 2009
- 14 replies
- Our son, Jelte, is 3 years old and is diagnosed with AlxD in jan 2008. We have had a few warmer days in the Netherlands now. The disease seems to get a bit "worse" at those days. He has more problems ...
