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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!

Explore topics in this discussion:

Schizophrenia Chemotherapy Lovastatin Stroke Bone marrow transplant

9 replies

cure

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

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

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.

marinemomkerry

this is kerry mccall. my son jack had a bmt for late stage x ald in october 2008. he maintains his sunny disposition and loves laughing so the physical decline is just a sidebar. the bmt for him went well except for a stroke on the right side of his brain. he did well afterwards for a short time. he is wheelchair bound and moves only reflexively mostly, has lost his vision and speech is very difficult. the decline continues to affect his back, joints, etc. but thankfully part of this is age regression so this helps him i do believe. hes happy most of the time. he had a loes score of 15-17 so we were told this was likely to happen. you dont believe it till its in your face though. how is your son? i know my daughter wrote him a couple times.

AA

Hi,

What is your son's LOES score?

AA

Can you tell me more what symptoms your sone has? Does he have white matter damage? How about VLCFAs? What is his LOES score? My son is 21 years old. We don't know where to go for a consulatation. Is Minnesota good palce to go?
Thanks.

AA

Can you tell me more what symptoms your sone has? Does he have white matter damage? How about VLCFAs? What is his LOES score? My son is 21 years old. We don't know where to go for a consulatation. Is Minnesota good palce to go?
Thanks.

teacher

Hi AA...we went to MN last November and our son had a BMT on Dec. 1st. His Loews score was 9. He did very well with the transplant (his younger brother was his donor) and we have seen very little decline. His disease was in his frontal lobe (which is unusual) and so the damage that we have seen has been cognitive. He is now a freshman (although we have pulled him out of school until he can get the H1N1 vaccine) and we are trying to find our new normal. We have lots of challenges with him, but are so grateful that we have been able to stop the progression. What is your story?

teacher

Please e-mail me at susan@puttinggreensplus.com and I'd love to share what I have learned.

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