Just Diagnosed

teacher
0 Recommendations

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, LD and schizophrenia diagnosis until an MRI was finally performed. We are now trying to see if he can benefit from a transplant. He functions well enough now to travel and enjoy life...the thought of a transplant is scary to us. We have been told that Lorenzo's Oil (and really anything else) will not help. I would appreciate any words of wisdom from any of you. Thank you!

3 replies

cure
  • By cure
  • Posted October 6, 2008 at 12:45 pm

Hi
I would contact Minnisota children's hospital as they are experts in treating ALD. They have researched the use of (NAC) N-acetyl L-cysteine which is suppossed to decrease some of the risks accociated with BMT and I think NAC is suppossed to be benefical anyway. NAC is a health suppliment that can be bought in a drug store. Some ALD patients also take Lovastatin a cholestrol lowering drug that reduces the build up of long chain fatty acids in plasma. I hope this info is of some help.

teacher
  • By teacher
  • Posted October 6, 2008 at 11:25 pm

Thank you so much for the advice. We are going to find out this week if he is a candidate for a transplant and then we are going to Minnesota to have a second opinion, so I'll check with the doctors there. What experience do you have with transplants? I've been told that it is very dangerous and we may have some tough choices ahead.

cure
  • By cure
  • Posted October 7, 2008 at 4:42 pm

The bone marrow transplant was not an option for our family situation. The information I have is only from searching for answer on the internet. From what I have read the timing of a BMT is very important for it to be successful. The risks are due to the fact that a patients can get infections from the chemotherapy lowering the patients immune system. Have you looked at the Adrenoleukodystrophy foundation web site? There is a forum with parents discussing BMT. If you click on "blogs" and then "community forum" you could contact them.

Add to the discussion

New user? Join here.
Forgot password?
Keep me signed in on this computer until I sign out

Search

Find information and discussion about health topics in 304,356 posts by members like yourself. Learn more...

Join

Join safe, secure groups sponsored by trusted organizations that care about your health. Learn more...

Connect

Connect with 80,781 members and make friends who share your interests, learn about conditions and treatments, find support and more. Learn more...

You