Hi There, I would like to know if anyone is using Idebenone in boys with DMD, and if so, is there positive results, or side effects etc,
Kind regards
Maxine Strydom

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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'm about to start my 2.9 y/o on idebenone. He weighs about 30lbs. Anyone have any suggestions on a starting dose?
When Joshua was 6 we started with 150mg then started moving up.  They do come in less mg though if you would like to wean him up.  If Joshua was 3 years old, I would do 150mg per day.  If he was to plateau with his abilities, I would then move up.  That is what we are doing now.  Joshua's neurogeneticist would like him to be on the maximum dose of 900mg per day and he weighs 67lbs, which equals approx. 13mg/lb.
naomi, is the increase in dosage for joshua a proactive step or due to any changes in him?
Thank you very much. i was thinking of starting off on 150mg so you've confirmed it for me.
The increase is because he is showing plateau signs.  He's not getting worse or better now.  With the increase, we should see the results within a week or two.

 

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!

I can only share what we have experienced... I can only pray it works for everyone else and they pass along what it, or any treatment has done for their children.  It keeps hope in our lives when we didn't have any at diagnosis.
Our Michal uses Idebenone 2x150mg daily, no side effects observed.

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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