Alexander disease (AxD) - Parents

seizures and vomiting

  • By HARLEYSPARENTS · New reply July 9, 2010
  • 7 replies
  • hi our 17 month old son has alexanders disease. in the last 4 half months has been constantly vomiting up nearly all his feeds. he has been put onto a milk free diet which seemed to help for a few weeks ...

Alexander disease hereditary???

  • By gaby018 · New reply June 9, 2010
  • 4 replies
  • Hi! I want to know if any parent with a child diagnoses with alexander disease (juvenile or infant) had been check with alexander diseaae as well. I have a brother with Alexander (juvenile) and my son ...

TRH therapy for Alexander Disease?

  • By gaby018 · New reply June 2, 2010
  • 9 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 ...

eyes hurting

  • By huntersmom41702 · Posted May 10, 2010
  • 0 replies
  • my son hunter has alexanders disease and has been complaining bout his eyes hurting and normally i give his eyes a kiss (kiss my hand and then touch by his eye) and that normally makes it all better but ...

ulf meeting ?

  • By huntersmom41702 · Posted May 4, 2010
  • 0 replies
  • does anyone no when there will be another meeting on alexanders disease ? there was one a lonng time ago that i remember but didnt get to attend because it was in Illinois and i am in oklahoma but i really ...

alexanders disease

  • By huntersmom41702 · New reply May 1, 2010
  • 3 replies
  • i would just like to talk to any one out there that has been thru this b4 i have some questions about spasicty and how did it affect your child with walking ...

Faith and love

  • By andreayhvh · New reply February 6, 2010
  • 3 replies
  • I´m Andrea from Brazil and have a sun Nicholas that has Alexander desease, but don´t have any information about this sindromy. He get a evolution but still speak yet and don´t walk alone. It´s very ...

I Believe in miracle

  • By andreayhvh · New reply February 6, 2010
  • 3 replies
  • Well, I believe in miracle and I believe in my Lord. I don´t stop to speak the Jesus´s message. I am completely yours Sir I does not matter what it caused me to the life I love you lord I go you with ...


  • By HARLEYSPARENTS · New reply January 25, 2010
  • 3 replies
  • 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 ...

Alexander Diesase - Juvenile

  • By gaby018 · New reply January 5, 2010
  • 16 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 ...

got the diagnosis

  • By HARLEYSPARENTS · New reply December 3, 2009
  • 3 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 ...

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 ...

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 ...

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 ...


  • 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 ...


  • 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 ...

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