Canadian Families

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Canadian Families

Members: 55
Latest Activity: May 16

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 Andrew Kerr on December 9, 2010 at 3:41pm
Thanks Jason, I wondered if it wouldn't require frequent visits. Every 2 weeks isn't really an option.
Comment by Jason G on December 9, 2010 at 3:40pm
there is also a long waiting list i hear
Comment by Jason G on December 9, 2010 at 3:38pm
you'll be there at least every two weeks.
Comment by Andrew Kerr on December 9, 2010 at 3:36pm
For those of you on the trial, can you tell me what's involved? I asked our Neurologist to look into it, but that was about a month ago and he hasn't gotten back to me. Hayden, assuming they are still accepting applications, would be eligible around May of 2011. He only started on Deflazacort in May of this year.

I'm just wondering how much has to be done in Calgary and how much can be done locally. We're a good 8-9 hour drive from Calgary, so if it would require regular checkups there, its not really an option for us. If its a couple times over a year, we could do that.
Comment by Jason G on December 9, 2010 at 3:33pm
Josh has thinned out a bit too.
Comment by Jennifer Kember on December 9, 2010 at 3:00pm
Have any of you with sons in this trial noticed that they have lost a bit of weight or are able to control their weight better? David is definitely doing better with his weight - so wondering if it has happened to anyone else?
Comment by Roman Litwinchuk on September 7, 2010 at 10:49pm
Yes. Zac is in the McMaster trial. Things are going well, No side effects or bad reactions.
Comment by Andrea Jardine on September 7, 2010 at 4:02pm
My nephew is the first cohort of the ACE031 study in Calgary. I believe that the open label study will go ahead as soon as safety/tolerability has been assessed.
Comment by Jason G on September 7, 2010 at 8:57am
Hey Roman. Is Zac at the McMaster trial? How's things been going?
Josh gets his first injection next week.
Comment by Roman Litwinchuk on September 5, 2010 at 9:49am
My son Zac is in the first cohort of the ACE 031 study. He will be getting his 3rd injection this week.
 

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