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Hi Karen,
The green tea extract has been considered and will start soon. Research is still active regarding where to buy. We treat the supplements like medication and take time to add them into the regiment. If your son is not on steroids, start idebenone!!! If I had known about Idebenone as much as I do now, I would have chosen it first!!!
Take care,
Naomi
Hi
I completely agree with Joshua mom.Idebenone is the first choice after steroids.I say :as long as it could benefit heart and breathing muscles,then idebenone most probably help other muscles
I've started Baylor on 180 mg morning and night. I started with a 3 minute step test which was 304. He is taking it really well now with his favorite yogurt. I plan on repeating the 3 minute step test exactly 1 month from when I did the base test, and then go from there.
@Joshua's mom- Your posts are so encouraging! Thank You =)
Thank you for the helpful info. and insight you have all shared on this discussion!
Hi Naomi,
The idebenone dosage depends on the child's weight or on how old he is? Will I get all the info from Kirkman?
Joshua's mom said:
Hi Karen,
The green tea extract has been considered and will start soon. Research is still active regarding where to buy. We treat the supplements like medication and take time to add them into the regiment. If your son is not on steroids, start idebenone!!! If I had known about Idebenone as much as I do now, I would have chosen it first!!!
Take care,
Naomi
Hi Galia,
I've looked and I can't find anything in Kirkman regarding the dosage, but on my bottle it says "Take one capsule daily or as directed by a physician." I got the information from Joshua's neurogeneticist. Using his max and Joshua's weight equals the 13mg per pound.
Take care,
Naomi
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