Dylan has been on Idebenone for 7 weeks now and I have noticed a great improvement in his speech. It is very fluid now, not that it was bad before but it could come "broken" sometimes, especially when tired. I just wondered have any other parents noticed anything similar with their own boys? Other people have noticed it too, which is good because it means i'm not imagining things! Can idebenone work already? He seems a little steadier too and seems to take steps a little easier too. Just wondered really when did you all start to see changes with idebenone, if any at all.
What is the dosage and how do you get it (Pedi prescription)? I've been considering it for my 4 year old as he's on cod liver oil and I've seen an increase in his speech. Thought we'd give Idebenone a try too.
HI Kira, because we're in Europe I have to order it from your side of the pond ;) through smartpowders.com, the one I have comes in powder form, bright orange and not nice tasting but I disguise it in fresh orange juice. I give Dylan just over half a teaspoon which is equivalent to 900mg a day. We did four weeks at 450mg and as they were no side effects I doubled it. I probably should have increased a little more slowly but there still hasn't been any side effects. I had to get it after reading about what the other parents had to say about it, it seems to be one of the only things to really benefit the boys and I have to say I really have noticed it in Dylan. If you are in the US there may be other places/providers where you can get it? maybe cheaper or more local? I tried fish oils with Dylan with zero success. I have to hide everything or he won't take it!
lol I'll research around here and see if I can find it pretty cheap and let you know the cost (I read some things on the Jett Foundations website about how not all supplements are created equal since there is no one overseeing them). Of course you'll probably have to do the Euro conversion. :) I can always ship to you if it's less money. I wonder if I should take Connor off the CoQ10 and Cod Liver Oil if we switch? More research.
Have you tried Protandium? We tried it last year . . the typical try for a month and see what happens. We saw an increase in Connor's speech with that too. However, we never really know if it just happened to be a growth spurt at the same time but we don't want to experiment by taking him off. The same thing happened with the Cod Liver Oil but saw more of a speech improvement with that.
And we know the woes of concealing. We have to crush and hide stuff in apple sauce/chocolate pudding with a Mike and Ike candy chaser. :)
Thank you very much for offering to ship it here, it was actually really affordable, i think the grand total with shipping was around 40 dollars, which is about 30 euros and we've had 7 weeks of it and I reckon another 3. I know they are all different and there is a risk of not being one hundred percent certain of those companies but I picked that one based on what other parents were saying. Also I'm more likely to give something a go now and see how it goes (poor Dylan is my little experiment!) than not trying at all. I still have Dylan on the Co q 10 and I'll keep him on it even with the Ideb. I have seen a few parents giving Protandim, is your son still taking it? MIght look into that too although I really am running out of food to hide things in. If I put anymore things in his Orange juice it will actually become solid :). Nutella spread works great at concealing the Q10 and fresh orange juice works wonder to hide the Idebenone and Glutamine. Just made granola with with shed loads of ground flax, hemp, seeds, nuts and others and he thinks it's just corn flakes and syrup :)
That's good to know. I might wind up buying it from the same place then. :) I can totally relate to running out of things to hide supplements in! Connor is still taking Protandim. We saw an increase in the softness of his calves, he talked more and I think seemed to have more energy. He's been on 1/2 a pill for about a year. I'll have to look up the Glutamine--Connor isn't on that one (he's on liquid CoQ10, Vit D, Cod Liver Oil and Protandium). We've added Prevacid since he keeps saying his tummy hurts. Deflaxacort when it gets delivered from your side of the Pond. :) Awesome about the granola--we will have to try that. Right now we "hide" the flax seeds in his yogurt.
Isn't it amazing that our "experimental" kiddos are so tolerant?
Are you using Deflazacort? Our specialist told me they stopped using it here in favour of the other one, because there was a higher risk of cataract, but really i think they are the same and that, as for any medications, some will get more side effects than others. Dylan still isn't on any steroids, I really can't bring myself to it yet, and the more I read about them the less I want him on them. I probably will have to give in as some point but so far there is nothing wrong with him and I feel like it'll do more harm than good. as for the Glutamine, I'm not sure if many parents give it, I just read a lot about it and its role in repairing tissue (it is just an amino acid) and since it has no side effects and is cheap, i'm chancing it. My mother has fybromyalgia and other problems and has started taking glutamine a couple of months ago, and has already started seeing changes. When it comes to Idebenone, just take a read on what the parents have to say, it is very encouraging. There was also a french study done that showed significant improvement in lung function in late teenagers with DMD and a protective heart function. Should be convincing enough!!! :)
I can,t find it now but there were already results from cQ10 trial and the results were encouraging.