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X-linked adrenoleukodystrophy (X-ALD) - Parents
GENE THERAPY
- By LaurieRB · Posted November 17, 2009
- 0 replies
- Here is a link from Dr Patrick Augbourg. He attended the conference and announced the breakthrough in treating ALD with Gene Therapy. http://www.youtube.com/watch?v=oUqY0Q2l2 vE Any questions regarding ...
Prolactin and Remyelination
- By shawtom2 · New reply November 6, 2009
- 2 replies
- Has anyone else heard of the "University of Calgary" discovery, that PROLACTIN helps with Myelin Repair? I've read some articles about this, and I was curious if anyone else heard of this. Here are a ...
Gene Therapy
- By Quiller · New reply November 6, 2009
- 5 replies
- This link was sent to me yesterday http://www.latimes.com/features/health/l a-sci-gene-therapy6-2009nov06,0,1848965. story ...
How much mustard oil to use?
- By ConnorsDad · New reply October 31, 2009
- 13 replies
- Hello everyone. My 7 year old was diagnosed with ALD in March of this year. We managed to obtain 2 bottles of Lorenzo's Oil and started him on the oil after his initial blood work was done. Unfortunately ...
Love and Science Conference
- By LaurieRB · New reply October 23, 2009
- 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 ...
Just Diagnosed
- By teacher · New reply October 11, 2009
- 9 replies
- Our 14 year old son was just diagnosed with x-linked ALD. For the past 2 years, we have been searching for an answer to explain the change in his behavior and cognitive skills. We have been through ADD ...
ALD children near Rochester?
- By connorsmom · New reply September 24, 2009
- 2 replies
- Wondering if there are any other ALD affected children who live near Rochester,NY? I would love to get a group going to meet others. I know my son feels very different since he doesn't know of anyone ...
post tx ALD
- By marinemomkerry · New reply September 11, 2009
- 1 reply
- would like to know how others are doing post tx and if anyone used aceitylcisteine. if there was a decline when did it start and how bad did it get. sorry to ask but i need to know what i am facing. i ...
my son joshua
- By LilLyn1105 · New reply August 13, 2009
- 5 replies
- hi my son is 6 years old was diagnosed january 16 2008 with ald he is now very badly affected by this horrible disease he has lost alot of weight and is ng tube fed can anyone give me some ideas to get ...
ALD Lorenzo's Oil Study
- By blissboys · New reply August 10, 2009
- 15 replies
- Does anyone know what hospitals are doing the Lorenzo Oil study for boys with X-ALD? I know that Baltimore does, but I'm wondering where else I can take my boys if I need to. I waited 3 months to get ...
Boys exiting the X-ALD study
- By bnkg · New reply August 7, 2009
- 5 replies
- My wife and I just returned from our 7th annual visit to Baltimore for the X-ALD Lorenzo's Oil Study. Two of our three boys are in the study; our middle son does not have the biochemistry for ALD. Thankfully ...
Neuro Optimizer
- By shawtom2 · Posted July 28, 2009
- 0 replies
- Has anyone ever used Neuro Optimizer, by JARROW or Life Extension Booster supplements. I read on an ALD website that some people have had success using these supplements. Has anyone, with a son who has ...
ALD and growth issues
- By connorsmom · New reply July 25, 2009
- 7 replies
- Hello- I'm new to this group, but am excited to hear from other parents of ALD children!Our son was transplanted in 2005, and is doing well now. He does,however, have growth issues. He has grown only ...
Adrenal function
- By connorsmom · New reply July 17, 2009
- 2 replies
- I'm wondering if anyone has seen a change in mental status when the hydrocortisone level is a little low? My son Connor seems to have very off/slow days and sometimes if I double his dose it improves ...
N-acetyl-L-Cysteine for ALD
- By ConnorsDad · New reply June 30, 2009
- 1 reply
- Does anyone have any experience with their son taking NAC (N-acetyl-L-Cysteine)? I know that the BMT patients in Minnesota are on this drug to increase the success rate of their transplant. Has anyone ...
Myelin Repair
- By shawtom2 · New reply June 27, 2009
- 7 replies
- I am curious to know if any parents of boys with x-ald have any information about Myelin Repair. My son had a successful cord blood transplant in November of this year(his 2nd cbt in 4 mos.). We are now ...
x-ald and low fat diet
- By dawsiesmom · New reply June 22, 2009
- 12 replies
- My son was diagnosed with x-ald. We are still waiting to get in to neurologists and genetic counseling. I have been reading about the low fat diet and wondering if I should start my son on a low fat diet ...
All 3 of my boys might have ALD
- By blissboys · New reply June 20, 2009
- 6 replies
- My boys ages 2 and 4, were diagnosed with X-ALD last week. My 2 month old might have it too. I am very concerned what the future holds for them. We are still trying to set up an appt. in Baltimore. I ...
Fasting blood tests or not fasting?
- By Js_Mommy · New reply May 21, 2009
- 2 replies
- When your children were tested had they been fasting for any length of time? Dr. Raymond mentioned fasting blood test in his reply to me. Our son had not been fasting at the time of his initial test ...
Confused with son's diagnosis; are there male carriers?
- By Js_Mommy · New reply May 20, 2009
- 14 replies
- My almost four-year-old had an MRI at 3 yrs 9 mos which showed "mild delay in myelination." The degree is that it should have been fully myelinated by age two. We then had him tested for the leukodystrophies ...
