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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 hoping to reverse the neurological damage, the disease caused.
Does anyone have any info on Myelin Repair? We do a lot of research on this, but maybe there is something we're missing. Any info from anyone would be appreciated.
Thanks, Ann
look up jonathan masters on caring bridge
his dad has alot of answers
Congrats on the successful CBT!
I've been trying to find info on Myelin Repair too. Any info you have found, I would love to hear.
Also, I can't seem to find Jonathon Masters on Caring Bridge. Can you give me a link?
Thanks
write me at marinemomkerry on gmail and i will forward your email to him
yes there are clinical trials and research ongoing but dont hold your breath
my son had a successful bmt with a sib donor but decline started at 3-4 months and continues
bmt only slows it down it doesnt really stop it but you have to try i know
Acorda, http://www.acorda.com/ supposed to be having a clinical trial for a new drug, that supposed to help repair Myelin, in the Fall(October). Also, Steve Goldman, from the University of Rochester, is working on therapies for Myelin Repair. Here is the article http://www.futurepundit.com/archives/001901.html
I will let you know of anything else, I think might help.
Thanks Shawtom for the links! Always helps to know that the possiblity for Myelin Repair is out there. My son had his CBT 2 years ago for MLD. Now we need to fix the Myelin!
Has anyone tried acupuncture for severe muscle tone and spactisity? My son has very bad muscle tone. He is currently on Baclofen and is getting Botox. I am interested in alternative therapy for his muscle tone and neurological problems. Has anyone had any experience with acupuncture or other alternative therapies for muscle tone and neurological problems?
Thanks
Have you asked Dr. Kurtzberg, about the Myelin Repair? Does she know of anything in the pipeline?
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