Canadian Families


Canadian Families

Members: 55
Latest Activity: May 16, 2018


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 Joshua's mom on June 18, 2010 at 11:59am
Idebenone is a form of COq10. Here in Canada they named it Catena. The three boys whom are taking it are 23,7,6, and the girl is 11. They were able to do a lot more than what they could. One boy, 6, couldn't speak yet and is now close to sentences... he started them approx. 3 weeks ago. There were noticible differences within 2 weeks for all. I'll link the sites and where we get it from.
Comment by Jennifer on June 18, 2010 at 11:33am
Thanks, I have seen some of them, but I will check out the others. My son is 5 and also has autism, he is fairly verbal, but I am worried about him not being able to express side effects and whether or not he can stay still for the scan. But we will see how much progress he has made by Fall.
Comment by Debra Chiabai on June 18, 2010 at 11:33am
Hey Jennifer,
I'll see you in Denver!

Comment by Joshua's mom on June 18, 2010 at 11:26am
Comment by Jennifer Kember on June 18, 2010 at 11:19am
We are also thinking about participating in the trial but are not decided. We are going to the PPMD conference in Denver and hoping to get more information. We will try to take good notes so we can share the info with the group. It is my understanding that they don't have approval to do the trial in the States.
Comment by Joshua's mom on June 18, 2010 at 11:17am
Joshua is already enrolled. He was enrolled two weeks ago. He was the one who really wanted to take part and maybe find an alternative treatment.

Just a question... has your son's doctor suggested idebenone yet? It is approved in Canada for Frederick's Ataxia, and in Phase II for Duchenne. Joshua was going to be a part of the trial... but he was already taking it. It is amazing what it is doing. Once we ordered it from the US, four others who live close by started it too. They are running, jumping, spinning, not falling unless they trip, and the stairs are no big deal at all anymore.
Comment by Jennifer on June 18, 2010 at 11:03am
We are thinking about participating in the trial, but still undecided. We would be travelling to Halifax for the trial, and they will not start recruiting until the fall, so we should have some time before we decide. How about you, are you enrolling your son?
Comment by Joshua's mom on June 18, 2010 at 10:59am
I know I went straight to Research to start the discussion, but I was wondering if anyone else in Canada is participating in the Phase II trial of ACE-031. They are being held in Calgary and Hamilton. If you don't live there, they will fly you there!
Comment by Debra Chiabai on December 16, 2009 at 10:38pm
Alex is on Protandim. It is a tablet about the size of a decent multivitamin so you either have to have a child that will swallow pills or you have to crush it. We crushed for a while until we convinced Alex that it was better to swallow it whole than have to taste it. We call them swamp pills and they come by the name honestly since they are green and taste and smell kind of nasty.

You can't get it in Canada so have to get it from the States. I have checked in on the shelf at GNC in New York State and it is more expensive than just having it ordered directly from the manufacturer even when you factor in the duty.
is the website. I've ordered for the past 3 years and they are very prompt in shipping to Canada. I order 6 months at a time (6 bottles). The last shipment was $319.70 US plus some duty but I don't remember what that was.

We think Alex benefits from it....or at least we don't want to take him off since he is 9 1/2 and still VERY ambulatory. That being said he is also on deflazacort and takes many other supplements so it's hard to tell what does what.

Hope that helps.

Comment by Joshua's mom on December 16, 2009 at 10:18pm
Joshua was on Protandim for a few years and it helped some, but after 3 years it wasn't making much of a difference so we took him off 1 year ago. It was easy to order and he does take supplements that are also the ingredients in Protandim. I'll send you the website though!

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