Alexander disease (AxD) - Parents

Sleepless Nights

  • By Dantes_Daddy · Posted 10:03 am
  • 0 replies
  • Does anyone have a child that wakes up screaming and crying in the middle of the night? My son has been waking up crying and screaming, gripping the blankets like he is in pain. Once I calm him down he ...

My Girl she's 12 years old

  • By cooneyc3 · New reply April 13, 2014
  • 9 replies
  • My child had an MRI at age 6. She has Alexander's Disease. She is 12 now. She goes to a special school. She doesn't speak or use the bathroom. How is this disease going to play out??? What do I look for ...

Spanish speaking patients

  • By AlvaroHSR · New reply April 7, 2014
  • 5 replies
  • I am following a patient with Alexander Disease in the state of Iowa in the USA. Parents speak Spanish and they have found it difficult to get support locally due to the language barrier. They do not ...

Walk for ULF Atlanta

  • By Daniels-Dad · New reply March 7, 2014
  • 3 replies
  • Hello, Our son Daniel will turn 4 in April and was confirmed to have Alexander Disease in October of 2012. My wife Deb has organized a walk for ULF that will take place in Peachtree Corners, GA. on Saturday ...

Michigan Leukodystrophy Awareness Walk

  • By all4okb · Posted March 3, 2014
  • 0 replies
  • If there are any families who are looking for support, encouragement or love, we host a walk every year in Dewitt Michigan(near Lansing) in honor of our daughter Olivia, who is 5 yrs old and has AXD ...

My daughter has alexander disease

  • By mommyto4kids · New reply January 16, 2014
  • 2 replies
  • My daughter has alexander disease .. i would love to meet more families :) heres my daughters caringbridge page perry ...

Does your child have behavior challenges or trouble sleeping soundly?

  • By Tmegg · New reply January 7, 2014
  • 4 replies
  • I wanted to check with other parents to see if your child has emotional breakdowns or violent fits? Our daughter is 9 and her fits have become much better but when she does have them, they are very violent ...

min van with assisted seat?

  • By dah · New reply September 10, 2013
  • 2 replies
  • Does anyone have the Toyota Sienna with the Assisted Seat? If so, do you recommend it for the kids with AxD? Does anyone have a van that has been modified? Do you find that it is even necessary to modify ...

3months old baby girl

  • By gmori · Posted August 17, 2013
  • 0 replies
  • Hello.we are from Perú my litlle girl MICAELA started whit severe mioclonis convulsions since she was 2 months ....things are not doing well shes is suffering a lot of apneas as well as convulsions all ...

Alexander disease with R239C mutation

  • By thanu · New reply May 29, 2013
  • 10 replies
  • Hi, Is there anyone having AxD with R239C mutation ...

working moms with AxD kids

  • By thanu · New reply May 4, 2013
  • 4 replies
  • Hi , Currently I am a home mom.I have a 1 1/2 yr old kid with AxD and another 4 yr old kid.I am planning to go to work to make both ends meet at least after a year. Please suggest me is it a right decision?Is ...

Teenager with AxD

  • By alzen · New reply March 15, 2013
  • 2 replies
  • Our teenager has Alexander Disease. Any other teens out there with AX? How are you dealing with your symtoms, schooling, family life? What are you or your families greatest challenges? Are you happy with ...

8 Year old with Alexander's disease- recent progression

  • By mason5852 · New reply January 19, 2013
  • 20 replies
  • My eight year old daughter was diagnosed with some form of a Leukodystrophy back in 2008. Over a year later, they figured out that she has Alexander's disease. She has had good times and bad times as ...

faeces problem

  • By tala · New reply January 1, 2013
  • 10 replies
  • Hi,my 20 month daughter disgnosed with AXD when she was 3 month,now she has faeces problem,her docter prescriped lactul solution and it was ok until recently but now i use Royce Enema in rectum,i will ...

Special school for leuko kid

  • By navya · New reply June 29, 2012
  • 3 replies
  • My daughter is 2 and half year old with Alexander's disease.she has developmental delays in all there is no regularity for physio and occupational therapies.they will give periodically except ...

Mayo clinic

  • By Connorsmom929 · New reply June 20, 2012
  • 3 replies
  • Does anyone's child see Dr. Deborah Renaud at Mayo Clinic? She has agreed to see my son but wanted to know if anyone had any experience with her ...

Brain white matter

  • By Satwant · New reply June 16, 2012
  • 4 replies
  • Hi everyone I am from Singapore. My fourth child A boy has developmental delay. Last year we went for his brain scan. The scan showed that there is some increase T2/flair hyperintensity in the periventricular ...

infant Alexander Disease

  • By AEO-Meme · New reply April 13, 2012
  • 10 replies
  • My 15 month old granddaughter has been given a preliminary diagnosis of Alexander Disease. We are waiting for blood test to come back to confirm. I have been on line and read what I could find but everything ...


  • By PRINCESSHalicia · New reply April 7, 2012
  • 9 replies
  • My almost 3 year young daughter was diagnosed with Alexander Disease today. I do not know how tohandle this! They say this fatal everywhere i read. I am so hurt!!!! This little girl saved me and her father ...

Give It Up!!!!

  • By natalia42681 · New reply March 29, 2012
  • 2 replies
  • are there any other parents that are dealing with Asymptomatic children that are in begenning stages? without severity in alexanders? or for that matter the parents that have been dealing with it all ...

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