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IDEBENONE

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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Permalink Reply by David on October 6, 2011 at 10:00am

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

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Permalink Reply by Amrit on October 6, 2011 at 10:49am

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

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Permalink Reply by JUAN PEDRO ARBULU on October 6, 2011 at 12:25pm

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

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Permalink Reply by David on October 6, 2011 at 12:58pm

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.

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Permalink Reply by Amrit on October 6, 2011 at 4:11pm

Thanks David for your reply. please keep us posted.

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Permalink Reply by Galia Ben Ishay on October 7, 2011 at 3:38am

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

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Permalink Reply by wainaina muiruri on October 9, 2011 at 4:40am

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