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Treatment and therapy
Treatment for Adrenoleukodostrophy
- By AA · New reply November 16, 2009
- 27 replies
- Ny son 21 years old has white matter damage on his MRI and elevated very-long-chain fatty acids in his blood. By reading on Internet this is confirmation for only one disease - Adrenoleukodostrophy. Is ...
AMN
- By AA · New reply November 9, 2009
- 8 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 ...
Glyconutrients for AMN
- By msh · New reply November 2, 2009
- 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 ...
ALD / AMN
- By AA · New reply October 20, 2009
- 9 replies
- Is there anybody who can share good experinece that ALD or AMN was cured and myelin was repaired ...
ALD
- By AA · New reply October 19, 2009
- 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 ...
Kennedy Krieger Institute
- By Miraclechildsmom · New reply October 19, 2009
- 23 replies
- Can anyone tell me anything about the Kennedy Krieger Institute? My sons neurologist said something about sending my son up there since all of his test are coming back negative. I have researched it but ...
Mustard oil - KTC
- By AA · New reply October 14, 2009
- 12 replies
- KTC mustard oil has a label "external use only". Is it OK to take it internally ...
AA
- By AA · New reply October 12, 2009
- 3 replies
- Can VLCFA be elevated, but it's not ALD or AMN? What otehr diseases can be ...
ALD / AMN
- By AA · New reply October 10, 2009
- 7 replies
- Any information on Loes score will be appreciated. Is it possible that there is brain damage, but at some point it stoped and did not progress further ...
Cure for leukodystroph????????
- By RicardoNogueira · New reply October 8, 2009
- 11 replies
- In 2009 begun to be used in human gene therapy. What do you think? http://www.lastampa.it/_web/cmstp/tmplru briche/scienza/grubrica.asp?ID_blog=38&I D_articolo=1068&ID_sezione=243&sezione=N ews ...
ALD / AMN
- By AA · New reply October 6, 2009
- 2 replies
- anybody heard about MEDRA treatment ...
Treatment for ALD
- By AA · New reply October 2, 2009
- 2 replies
- Can anybody share his experince of having ALD or AMN in adult age? My son is 21 ...
Lecithin
- By AA · New reply October 1, 2009
- 1 reply
- Do you know anything about lecithin as a treatment for ALD? Any known side effects ...
phenobarbitone
- By HARLEYSPARENTS · Posted August 15, 2009
- 0 replies
- our son harley is 9 months old now. He was on 45mg twice a day but was very sleep. Level in blood reached 46. 6 weeks ago He was put on 40mg once a day. His levels in blood is now 14 and fitting has started ...
fetel stem cell
- By HARLEYSPARENTS · Posted July 31, 2009
- 0 replies
- has anybody looked into this type of treatment, or any idea if it works http://www.medra.com/index.html any help or advice appreciated ...
L-Arginine Pro v Con ?
- By DMBM · New reply May 1, 2009
- 2 replies
- Feeling a bit cranky tonight, it's been a whole 7 years since the first major problem and suddenly I'm impatient, probably thinking about the testing next week. So I went to CVS to get some Arginine ...
My daughters mouth
- By brandyh74 · Posted March 22, 2009
- 0 replies
- Hello, I have a 10 year old daughter who has neonatal adrenoleukodystrophy. Recently I have notice a lot of blood around her mouth and a metallic smell from her breath. Her dr. gave me a mouthwash that ...
vestibular therapy
- By tallcrowe · New reply August 4, 2008
- 7 replies
- has anyone tried or even heard of vestibular therapy? with recommendations from both of my son's therapists we are approaching this therapy as a possibility. just wondering if anyone has had any experience ...
provigil
- By Mick · Posted May 7, 2008
- 0 replies
- Has anyone had experience with provigil? It is a drug that keeps the awake button on without being a stimulant. My wife has adld and is very sensitive to medicine. Unfortunately her condition is such ...
