Canadian Families

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Canadian Families

Members: 55
Latest Activity: May 16, 2018

Discussions

New trial coming to Winnipeg

Started by Joshua's mom. Last reply by Joshua's mom Jun 21, 2013. 7 Replies

Who pays for your deflazacort?

Started by Angie Evans. Last reply by Andrew Kerr Apr 2, 2012. 7 Replies

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Comment by Marian Lamberson on July 6, 2010 at 6:25am
Hi, not sure where you are getting your idebenone??? Can this be perscribed??
Comment by Joshua's mom on July 5, 2010 at 10:53pm
The idebenone has become a godsend! Within 2 weeks after Joshua started 1 idebenone per day he had more energy, could run faster & longer distances, could almost keep up to his friends, and the most impressive was his physiotherapist called home after working on him and asked what was going on because his muscles weren't stiffening like they were before. When we went to 2 per day; his energy continued, his school marks climbed, his sight words went from 28 to 96 within the last term, and he started reading and doing math at grade level. He wouldn't have been held back if he was a 'normal' student and not improved.
Comment by Angela Bourgeois on July 5, 2010 at 9:45pm
Is everyone continuing to feel that idebenone is helping their sons?
Comment by Roman Litwinchuk on June 18, 2010 at 10:15pm
Thanks. Zac is almost 14 and on deflazacort. He is still ambulatory.
Comment by Joshua's mom on June 18, 2010 at 9:42pm
The boys are 7 & 6. They are both on deflazacort... and many other supplements!

Naomi
Comment by Roman Litwinchuk on June 18, 2010 at 9:16pm
Hi. My son Zac is going to the initial meeting with the Doctor this Wednesday in Hamilton. I would like him to participate, but the decision will be ultimately his. Joshua's mom: re: idebenone. How old are the boys showing improvement? Were they on other medication/steriods?
Comment by Joshua's mom on June 18, 2010 at 6:19pm
We were prescribed 150 mg capsules... so we ordered those.
Comment by Debra Chiabai on June 18, 2010 at 6:10pm
So is that the 45 mg caps or the 150 on the Smart Nutrition site?

Alex is 10 but only weighs about 30 kg so I figure 2 would work for him.
Thanks,
Debra
Comment by Joshua's mom on June 18, 2010 at 4:58pm
Joshua is 7 years old & weighs approx. 28 kg. We started him with 1 per day and after 6 months; bumped him up to 2. Joshua should be on the 2 per day for quite a while. The 11 year old girl takes 3 per day.
Comment by Debra Chiabai on June 18, 2010 at 4:44pm
Hi Joshua's mom,
What dose of idebenone do the children take?
Thanks,
Debra
 

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