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 Cosmin F on December 16, 2009 at 6:26pm
Protandim is a food supplement supposed to reduce oxidative stress through influence on free radicals, acting somewhat similar to CoQ10 and Idebenone. There are no actual clinical trials that prove its effectiveness for DMD, however many parents of DMD boys reported benefits. Robin Sharp, DMD parent from UK, has put together an observational study, results can be read at
http://www.trialserve.com/publications/Protandim_DMD_Results.pdf
There are also several discussions on Protandim in the main forum.
Being a supplement and not a drug per se, it is not regulated by any drug admin nor covered by any insurance. It's a personal choice whether to give it a try or not.
While it can be ordered from the main Protandim website, I was wondering if there are any issues with shipping to Canada/border&customs and whether there would be any other local suppliers to consider.
Comment by Steve Beaulieu on December 16, 2009 at 5:01pm
Hi Cosmin, Thanks for the info. What is Protandim?

Steve
Comment by Cosmin F on December 16, 2009 at 3:29pm
Hi Andrew, I've already replied in the discussion on deflazacort. No hoops whatsoever. Please keep in mind that Pharmacare covers drug expenses for everyone in BC, not just DMD patients.
I would really appreciate any advice on supplier for Protandim.
Comment by Andrew Kerr on December 16, 2009 at 2:50pm
Hi Cosmin, not to derail this discussion, but I was wondering if you could comment more on deflazacort and Pharmacare. It seems BC may be one of the only provinces to cover it. Did you have to go through any hoops to get it covered?

I've started a related conversation on this topic.
Comment by Cosmin F on December 16, 2009 at 1:49pm
Hello everyone, first post here, new to the group and relatively new to DMD (Dacian is 5 and was diagnosed only 4 months ago). We live in Vancouver, go to Vancouver Children's, the neuromuscular team is just amazing.
Anyways, previous discussion regarding steroids: so far in BC we have deflazacort paid for by Pharmacare, the provincial program for prescription drugs, and Dacian is registered with the At-Home Program, another provincial thing that covers some medical expenses for kids with rare medical conditions.
Today's question: which supplier should we use for Protandim? Any particular website to order from, and any issues with shipping/crossing the border?
Wishing everyone Peace and Joy for the Holidays.
Comment by Joshua's mom on December 9, 2009 at 10:11am
Since the snow finally decided to fall and stay... we've found that Joshua's ski-pants are snug over the one boot his 'strong' leg is in. ( His left leg is stronger and is the lead leg for everything.) Has anyone else come across this problem too?
Comment by Marian Lamberson on December 9, 2009 at 7:18am
Angie, i have to say i have been loosing sleep over winter....are his boots too heavy, what if he gets stuck in the snow at school...what if he slips and falls...We have a snow day here...I am sure most of you in Ontario are having the same weather...not sure what you all do for winter gear..is some lighter than others...??
Comment by Marian Lamberson on December 9, 2009 at 7:01am
Hi Roman welcome to PPMD!!
Comment by Andrew Kerr on December 9, 2009 at 12:21am
I sort of forgot to introduce myself. My wife Mandy and I have two boys, Hayden (4) and Cameron (1), both with Duchenne. We also have two nephews Noah (7) and Carter (3) with the condition (Mandy and her sister are both carriers). We're in Weyburn Saskatchewan, about an hour's drive southeast of Regina.
Comment by Roman Litwinchuk on December 8, 2009 at 10:21pm
Thanks for the welcome. Yes, I know Markham very well. Winter clothing is always a challenge. We have had luck with getting coats and boots from Lands End (online US store). They tend to fit, the quality is very good and you can return items very easily.
 

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