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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Galia,

There is no firm dosage rule so every doc will have a different opinion.

According to Santhera trial, boys under 45kg get 450mg/day, boys over 45kg get 900mg/day. Parents on this discussion range from 150mg/day to 900mg/day.

My son just jumped from 180mg/day to 900mg/day with no ill effects (after 5 days).

-David


David,

How old is your son? How long he is been on 900mg?

Did you notice any positive effects?

My son is 7.5 and we started about 4 months back with 150 mg and recently we strted giving him 450mg.

Thanks,

Amrit


David said:

Galia,

There is no firm dosage rule so every doc will have a different opinion.

According to Santhera trial, boys under 45kg get 450mg/day, boys over 45kg get 900mg/day. Parents on this discussion range from 150mg/day to 900mg/day.

My son just jumped from 180mg/day to 900mg/day with no ill effects (after 5 days).

-David

I am usig 600mg for 2 months 24 kg 6 1/2 years..no side effects, doing well but will jump onto 900mg soon.

Kirkman´s.

JP.



Amrit said:


David,

How old is your son? How long he is been on 900mg?

Did you notice any positive effects?

My son is 7.5 and we started about 4 months back with 150 mg and recently we strted giving him 450mg.

Thanks,

Amrit


David said:

Galia,

There is no firm dosage rule so every doc will have a different opinion.

According to Santhera trial, boys under 45kg get 450mg/day, boys over 45kg get 900mg/day. Parents on this discussion range from 150mg/day to 900mg/day.

My son just jumped from 180mg/day to 900mg/day with no ill effects (after 5 days).

-David

My son is 13. He just increased from 180mg/day to 900mg/day 5 days ago. Too soon to say much.

It will be challenging to identify positive effects as he is non-ambulatory. We play Wii sports every day for upper body exercize and the system keeps daily scores so perhaps that will provide a clue. Also, his Adaptive PE teacher is very attentive and has been asked to look for improvement.

Generally speaking I don't expect an improvement in ability, I hope for maintaining current abilities.

Thanks David for your reply. please keep us posted.

Hi David and thank you for your reply,

My son weighs 20 kg. He is 3.8 years old.

I'm very afraid of a dosage mistake and if, as I understand from what you and Naomi say, there is no accurate dosage rule, this is a problem...

I give my son green tea extracts capsules with a 80% catechine concentration. I get them from Progena, the Swiss foundation against rare diseases. The President of the foundation told me he's been giving them to his son for 5 years, his son is 10 years old and can still ride a bike. He also gives him something called astaxanthin, a powerful antioxydant and anti-inflammatory supplement derived from algae. www.youtube.com/watch?v=dulZR6jgs1w this supplement seems very interesting...

 




David said:

Galia,

There is no firm dosage rule so every doc will have a different opinion.

According to Santhera trial, boys under 45kg get 450mg/day, boys over 45kg get 900mg/day. Parents on this discussion range from 150mg/day to 900mg/day.

My son just jumped from 180mg/day to 900mg/day with no ill effects (after 5 days).

-David



Hi,David

I am Wainaina from Nairobi,Kenya,East Africa.Did you get your Idebenone shipment from Smart Powders?I have been emailing them using the Contact Us option on their site for sometime now but i am yet to get any response from their sales people.Do you know of any phone number i can use to call them?I am abit surprised by their lack of response.Thanks and good day.

Wainaina Muiruri 

Wainaina, try contacting Dennis at Smart Powders.   I have had no problem with them.  Maybe try again. Hope this helps.

 

sales@smartpowders.com

Hi,Donna

I have just mailed them again.I will keep at it,and i hope they will get back to me eventually.Thank you and have a blessed day.

Wainaina, I ordered through Smart Powders and Dennis was responsive by email.

Dennis Darroch
Sales@smartpowders.com
(855) MY-POWDERS or (855) 697-6933

where can you buy idebone?

On-line you can buy from any of the following or more...


:: Kirkman ::
smart nutrition
Smart Powder

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