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Gene Therapy
- By Quiller · Posted November 6, 2009
- Discussion in X-linked adrenoleukodystrophy (X-ALD) - Parents · 5 replies
- This link was sent to me yesterday http://www.latimes.com/features/health/l a-sci-gene-therapy6-2009nov06,0,1848965. story ...
Glyconutrients for AMN
- By msh · Posted November 2, 2009
- Discussion in Treatment and therapy · 1 reply
- Has anyone tried Glyconutrients ? There are so many products out there claiming to be the cure-all that I have become a bit skeptical. We have "friends" trying to palm this product off on us but it is ...
NIH survey of Parents of Undiagnosed Children
- By MLDdad · Posted October 29, 2009
- Discussion in Undiagnosed - White matter disorders of unknown origin (UND) · 0 replies
- The National Human Genome Research Institute at the National Institutes of Health (NIH) is sponsoring a study that seeks to learn more about how parents of children with an undiagnosed medical condition ...
got the diagnosis
- By HARLEYSPARENTS · Posted October 29, 2009
- Discussion in Alexander disease (AxD) - Parents · 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 ...
Second Opinion Program
- By Halls · Posted October 27, 2009
- Discussion in Undiagnosed - White matter disorders of unknown origin (UND) · 1 reply
- We have recently finished all the testing we can do at this point on my 9 month old daughter, and I am considering doing the second opinion program through ULF. Does anyone have any experience with this ...
QUESTION- VWM-GENETICS
- By mommyloveswyatt · Posted October 26, 2009
- Discussion in Childhood ataxia with diffuse CNS hypomyelination (CACH or VWM) · 1 reply
- I have a question about VWM and the genetic parts of it. We just got our sons blood taken today to confirm that he has VWM disease (vanishing white matter) and i know that when we get the results back ...
reflux
- By HARLEYSPARENTS · Posted October 25, 2009
- Discussion in Alexander disease (AxD) - Parents · 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 ...
New here, looking for families with VWM disease
- By mommyloveswyatt · Posted October 22, 2009
- Discussion in Childhood ataxia with diffuse CNS hypomyelination (CACH or VWM) · 2 replies
- Hi, My name is Felishia, i have a son named Wyatt who is presumed to have VWM disease (doing the test to confirm on monday). Im looking to talk with some families who have already been where we are right ...
AMN
- By AA · Posted October 22, 2009
- Discussion in Treatment and therapy · 7 replies
- We are still not sure my son has ALD or AMN. Can somebody share experinece with AMN. What are the test results that confirm AMN? Only VLCFAs or something else? What are the symptoms? Can progression stop ...
Please help us...
- By Nattyneedshelp · Posted October 21, 2009
- Discussion in Newly diagnosed · 14 replies
- My 23 year old sister has just been diagnosed with a form of leukodystrophy, they are currently testing the sub type.. We are so confused... There is NO instance of this in our family on BOTH sides of ...
Love and Science Conference
- By LaurieRB · Posted October 21, 2009
- Discussion in X-linked adrenoleukodystrophy (X-ALD) - Parents · 3 replies
- Is anyone planning on going to Dekalb, IL for the Love and Science conference in November? What will be covered is listed on the ULF website. They are going to talk about spasticity and many other topics ...
Deterioration of cognitive functions -
- By gaby018 · Posted October 20, 2009
- Discussion in Alexander disease (AxD) - Parents · 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 ...
ALD
- By AA · Posted October 19, 2009
- Discussion in Treatment and therapy · 1 reply
- Everybody is talking about low fat diet. What is considered a low fat diet? Fruits? Vegetables? I read that vegetable and fruit coverings is not good. I will appreciate any feedback ...
spasticity
- By jchumsley · Posted October 18, 2009
- Discussion in Adrenomyeloneuropathy (AMN) · 13 replies
- Hello, With my AMN (diagnosed in 1986), spasticity is main issue (along with tightness and weakness in my legs). I've been on baclofen since my diagnosis, but I feel that the benefits are less. I've looked ...
Support of mustard oil at Kennedy Krieger?
- By jchumsley · Posted October 18, 2009
- Discussion in Adrenomyeloneuropathy (AMN) · 0 replies
- Hello -- a friend was telling me that Ann Moser and the folks at KKI do not recommend mustard oil. This is (she says) mainly due to the lack experimental research with it and the variability of product ...
Has anyone tried magnesium supplements?
- By TaSad · Posted October 16, 2009
- Discussion in Megalencephalic leukodystrophy with subcortical cysts (MLC) · 0 replies
- I have been told that magnesium is involved with over 200 metabolic functions and is known to help with sleep and relaxation. Wondered if taking supplements would help with any leukodystrophy symptoms ...
Symptomatic ALD
- By NikkiFoster · Posted October 14, 2009
- Journal · 4 replies
- My 7 year old son was diagnosed a month ago with childhood cerebral adrenoleukodystrophy. In the past 2 months his hearing and vision have deteriorated rapidly. He is becoming very hyperactive and uncontrollable ...
ALD
- By marinemomkerry · Posted October 11, 2009
- Journal · 1 reply
- my 9 year old son had a bone marrow transplant almost a year ago. while i hope for more the reality is in front of me, he has lost pretty much everything but he does laugh and smile and is easily pleased ...
What Next?
- By 2tired2think · Posted October 9, 2009
- Discussion in Undiagnosed - White matter disorders of unknown origin (UND) · 8 replies
- I need some advice on where to turn now. My son has been diagnosed with undiagnosed leukodystrophy. He has seen 4 neurologist now and has had many tests done. We just went back to his current neurologist ...
Mustard oil - KTC
- By AA · Posted October 6, 2009
- Discussion in Treatment and therapy · 12 replies
- KTC mustard oil has a label "external use only". Is it OK to take it internally ...
