"It's important to note that the safety was proved with boys between 10 and 18. High dose idebenone is toxic in vitro to brain cells http://www.ncbi.nlm.nih.gov/pubmed/21547417# so this dose may be dangerous to young kids. Remember that…"
"Hi, we managed to reduce our sons levels by giving him COQ10 400mg per day with almond butter to help with its absorption. We also give 5000iu of Vitamin D drops in with this. An anti inflammatory diet is best with lots of fresh fruit…"
"My son had been on 900 to 1000 mgs of idebenone since he was 8. I feel it is very safe but your doc should weigh in.
Still don't see why this trial matters since this stuff is already available online."
Nimi, how old is your son? Do you give him steroids? I'd like to warn you about the serious side effects of this drug, they are very important while the pseudo advantages are only temporary. This is for good reason that it is not accepted in France for instance. Do you know Pr. Nevo from Hadassa hospital? I went to him twice and don't intend to return. I didn't appreciate him at all.
Personnally I give my son green tea extracts, fish oil, reishi tinctura in white tea and massage with nigella oil.
I recently talked to Professor Tremblay from Quebec who is working on a revolutionary technique called meganucleases. He told me there is still much work to do and it may take a few years to be ready, if everything goes well.
I'm the mother of a 3.5 years old boy with Duchenne. I give him green tea extracts, have you heard about this natural medicine? I suggest you see the effects of epigallocatechine gallate on the clinical trials site, a current study will soon evaluate its efficacity on children. Have you also heard about byglican and Professor Tremblay's meganucleases technique?