I have an 8 year old that was on CoQ10 a year ago. I took him off of it because I wasn't noticing any improvement. I believe I had him on 30 mg dose and from what I am reading that was too low of a dose. Does anyone have an idea of what an appropriate dose would be for an 8 year old? I read adults are on 300 mg per day but will that large of a dose harm a child?
My son is 12 and has been taking CoQ10 for many years. Dr Wong reviews his lab results annually during our visit and then adjusts his dosage, if necessary. He currently is taking 200mg daily.
Our son (7) was on 200mg per day, but didn't really any difference.
We switch him to 600mg per day of Idebenone, which is supposedly a better form of CoQ10. Can't say we've noticed anything major, but he seems to have some more energy and his muscles, especially calves, seem to be much softer/not as tight.
You should find a lot of great information on this site about other parents using Idebenone.
Hope this helps!
This helps a bunch. Thank-you!! I will contact my neurologist if she is ok with us starting on idebenone instead of CoQ10.
lisa burke said:
Hi Debbie, idebenone is, apparently, just a synthesized and stronger form of coq10. We've been giving Seth coq10 since he was 12 mos and recently added the idebenone. Idebenone has been tested as safe up to 900mg, but that is in much bigger children. We have started Seth on the 150mg and will gradually wean him up to 300mg - at the same time weaning off the much weaker coq10. I don't like to make sudden changes either way.
It's hard to know if the idebenone has made a difference as we've given Seth supplements from such a young age. However, he has recently started to be able to jump VERY slightly with both feet. Stairs are still difficult though. He doesn't use gowers.
Seth doesn't take steroids yet - we expect to start this year.
The coq10 i get in liquid form and add to his daily smoothie/juice. The idebenone comes in a (large) capsule and i melt a little chocolate, mix in the powder, and then leave to set in icecube trays. He really likes his 'daily treat' and has never complained about the taste. It could also be mixed with peanut butter/whatever else is your son's favourite.
Hope this helps.
Nick's doc is on board. She is recommending for his weight 600mg of Idebenone. Does anyone know where you can buy a dose that large? I am finding 180 mg to be the largest. The ingredients seem different when I compare Kirkman to Primaforce brand. Does the brand make that much of a difference? Where is the most cost effective place to buy Idebenone?
There was a recent study. They kept children on the average dose of 28,7 mq of CQ10 per kg. But the dose ranged vastly from child to child to obtain a serum lCQ10 level between 3 and 9 mikrogram. As I rember the doses ranged from 9 to 40 mg per kg.
I found the link to the CoQ10 trial: http://www.distrofiamuscular.net/coq10a.pdf