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 Angela Smith on August 17, 2009 at 8:53pm
Hello All,
Our son Ben has just been diagnosed with DMD this past April. He is four years old.
Just looking for other Canadian families who I can talk to.
Comment by Joshua's mom on May 31, 2009 at 6:00pm
Has anyone yet been prescribed idebenone for their boys yet? We were prescribed this medication (a medicated type of coQ10) and aren't able to get it at any pharmacy. Our neurologist is looking into it, but we may have to get it the same way we get our deflazacort... at the outpatient pharmacy in our Health Science Centre. Can anyone else in the country get it locally?
Comment by Debra Chiabai on March 9, 2009 at 7:27pm
That doesn't sound unfortunate at all. Enjoy!!!!!
Comment by Steve Beaulieu on March 9, 2009 at 7:06pm
Hi Deb.
We are unfortunitly not going this year as we are planning a trip with the kids to Mexico for a month, probably Oaxaca and Guanajuato where it is not too hot. We will be there next conference though. Are you going?

Steve
Comment by Debra Chiabai on March 9, 2009 at 5:49pm
Hi Marion, I'll catch up with you on FaceBook.
Comment by Marian Lamberson on March 9, 2009 at 5:23pm
yes Debra your right, we are lucky, we should get together soon, what are you doing this weekend? Coffee maybe? Lunch? We should take a ride out to my new (to me) house...let me know whats up!!
Mathieu has been wanting to play with the kids...
Comment by Debra Chiabai on March 9, 2009 at 4:37pm
Hi Steve...I always forget that we folks down south are "lucky" we have peers in our areas. It must really be a challenge when there just aren't that many DMD boys in an area.

Are you going to Atlanta?
D
Comment by Steve Beaulieu on March 9, 2009 at 1:10pm
It is good to here that Canadian families are conversing about our boys and the challenges that we all face. (This site makes it easier for sure.) I read every comment and find that within Canada funding and health benifits vary quite significantly between jurisdictions and Provinces and Territories. I really hope that all Canadian families can benifit from our universal health care system the way that they should. We are fortunate that way. All I can say for those that are having difficulty finding funding for medications or medical equipment for there boys is too please keep advocating for what you need! It seems that I am always advocating for one thing or another and this has been out of necessity not just as a right. We live in Yukon Territory with a population of just over 30,000 and we have the only two boys with DMD here. We have advocated everything from Educational Assistand in the class room to coverage of medical equipment and even allocation of government land for persons of special needs. It is an incredible amount of hard work and our boys deserve every once of effort .

I wish all of you the very best. I Hope to see more and more Canadian families at the annual conferances either here in Canada or Atlanta (PPMD anual conferance).
Hi Debra.

Steve Beaulieu
Comment by Debra Chiabai on March 9, 2009 at 9:10am
Hi Naomi,
Alex is on Straterra. It's the only non-stimulant ADHD med and the stimulant factor is exactly why our doctor wanted to avoid Ritalin and Concerta. It's also why she is monitoring his heart so carefully. His BP was 90/50 and his heart rate was 80 at the pre appt. Both are significantly lower than they were pre-Ramipril so I think we are good.

We've been trying non-medicated strategies for so long, we are all exhausted and frustrated...especially Alex. We're going with the meds, knowing it is less than optimal to have him on more meds. My main purpose is so we can confirm what his body responds to and what helps so then we know exactly what we are trying to target. He has a lot of volitility issues as well so we wondered how much of that is going to go away if we get his ADHD settled down.

Anyway...I greatly appreciate the input (seriously). I'm always willing to listen to what other people have tried. I'll keep you posted.

Happy Monday,
Debra
Comment by Joshua's mom on March 8, 2009 at 10:21pm
Hi Debra,
It sounds like Alex is doing really well! I was reading your comment and I saw you are putting him on ADHD medications. May I ask which one? It scares me and makes me really cringe to hear that. They have such a strong affect on your heart. Joshua too has those side effects with the medication and his doctor didn't want to put him on those meds because of the risks so he told us to try caffeine. We give Joshua a chocolate-covered espresso bean in the morning, as needed, and at bedtime with no side-effects. Ritalin, Concerta, etc. were all based on caffeine. The way he explained it to us is that with ADHD/ADD the mind is moving faster than the body can keep up with. Giving them the caffeine speeds up the body so they become level again. You know when your mind is racing and you are just too tired so you have a coffee and are able to speed up again? It's the same idea. It's not that you rested, it's the caffeine. Makes sense? I hope so.

Take Care,
Naomi
 

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