PPMD Community

It seems that Idebenone is not available online!I don't know if this news considered good or bad!

Good if it will be approved,bad that we can't buy it!

Any new ideas,please?!

Views: 7768

Reply to This

Replies to This Discussion

Joshua is 9 years old and weighs 67 lbs.  We were told he can go up to 950 mg.  He is on 500 mg and we will wean him up to the 950 mg as he needs it.  You can order from   :: Kirkman ::  but you have to call them directly to order it.  Otherwise the powder and capsules may be your best bet if you want to increase it over time.  Doing it that way is also a lot cheaper but time consuming when it comes to filling the capsules.  It's worth the time though.  If you have any specific questions, feel free to ask!  

Naomi

Evan is 7 years old/8 next month and about 58 lbs. Do you think starting him at 500 mg is ok or do you think we should start him off lower and work our way up? Does Kirkman sell the capsules?

Thanks for all your help. I really appreciate it!!!

Kirkman does sell the 150mg capsules.  Joshua was taking 500mg when he was 7.   It is completely up to you as to how you do it.  We, and most others, have not seen any negative side effects so if you were to start him on 500mg, you may see the positive side effects much quicker.  The first signs Joshua had were the hard calves turning soft and the physiotherapist noticed his range of motion had increased.

I think you can only get it now in bulk powder form.  You can measure it out and get some vegi-caps and fill those. 

Denise, we mix the powder in a morning "coctail", so for us it's much better to use the powder.

I would recommend that you start him on a lower dose and work your way up to the recommended dose. We found that taking the coctail at the end of breakfast works well, as our son (6 now) had some stomach pains in the beginning. Giving him fish oil at the same time is supposed to help the uptake in the body as well.

I ordered idebenone from two different places just to be sure to get it, so now I have too much. Gonna start taking it myself...

hi,

I had very bad experience with iHerb site ordering Idebenone. They charged my credit card and than put order on hold asking for some additional charge of 1 or 2 dollars.

How is difficult to pay 1 or 2 dollars without buying something they canceled the order, byt the amount on my credut card was not withdrawn....

so take care and call Kirkma first

sorry for complaining but I have to share my experience with you

Reply to Discussion

RSS

© 2017   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service