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Adrenoleukodystrophy (ALD) Online Support Group

Treatment for late diagnosed


#1

My son was diagnosed in 4/2014.But i didn't do anything to him for treatment ,because i'm from Vietnam and in my country this disease seems to be strange and very rare , my doctor didn't mention to me about any treatment. now myson is almost in vegetative state.Could i think of a BMT or gene theraphy, lorenzo's oil is still effective? if not ,what i have to do?

thanks very much for your advices


#2

Lorenzo's Oil is questionable. BUT you have nothing to lose. I wouldn't hesitate a second to pursue it. The other thing I would look at is N-acetyl-L-cysteine (NAC) The University of Minnesota has done a lot of research with it and are encouraged. A BMT or stem cell therapy may well stabilize things for a while but even they have limitations.

The thing I want to stress to you is even the delay in treatment really has had little effect. Your son has the most important thing of all - YOU. Hopefully you have no guilt. Our thoughts are with you. PLEASE stay in touch. WE do understand.

TJ


#3

Thank you very much.But i don't know what is NAC and how we can use it. And is it a good decision if i take him to the Usa for a MBT?


#4

Check with your doctors on NAC. They can often infuse it. It is also commonly available as a supplement. (I really don't know anything about supplementation stuff)

http://www.webmd.com/vitamins-supplements/ingredientmono-1018-n-acetyl%20cysteine.aspx?activeingredientid=1018&

Here is some reference to medical research on NAC and excellent dissertation:

http://conservancy.umn.edu/handle/11299/172111

And at least one study when used with transplantation:

http://www.nature.com/bmt/journal/v39/n4/full/1705571a.html


#5

What about BMT ?


#6

I have no clue what is appropriate therapy, we're not doctors here. Find the best you can where you can. Members can share their experiences, and little else.


#7

Binh, I think that you need to find the best doctor that you can, close to where you live, before you even consider going outside Vietnam.

Best wishes and good luck in finding the best care that you can get for your son,

Seenie from Moderator Support


#8

When my son was diagnosed, he had lots his vision and some of his hearing. We we’re told a BMT would not benefit him. My other son started Lorenzo’s oil shortly after his brother passed away. He is 11 years old now. I hope this helps and God bless your son and your family