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Canadian Families


Canadian Families

Members: 54
Latest Activity: May 17, 2016


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 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,
Comment by Debra Chiabai on March 8, 2009 at 4:51pm
Wow...that's really long now that I've hit the add button...sorry.
Comment by Debra Chiabai on March 8, 2009 at 4:51pm
Hi all,
I'm glad to see the Canadian folks starting to compare what they are getting in terms of support and care in each of the regions. I know there are some projects underway to get more standardized care and I think parents can do a lot to push for it as well.

A MacLaren stroller is a large stroller kind of like an umbrella stroller. We had one for our son Alex who is now almost 9 up until 1 1/2 years ago. It was a second hand one we had found at the special needs equipment exchange here in Ottawa. When it finally gave out, we went back to the exchange and found a nice wheelchair that fits him quite well. He doesn't need customized seating since he is only in it for longer walking trips so we just fitted it out the best we could with parts they had there and it fits him quite well. I find it handy when we have to hike all over the hospital for appts or when we go places like theme parks.

At the hospital it means that I can keep him moving at my pace since often we are rushing to get to appts. In theme parks and fun places for him, the wheelchair and our disabled parking pass help us get access to closer parking and shorter lines which makes all of us have a more pleasant day. We have done this both at Disney and Universal Studios and it is one of the few perks in dealing with DMD.

We also have Alex on supplements (which we pay for out of pocket) -CoQ10, Vitamin D, multivitamin, calcium, evening primrose oil and omega 3 capsules (those two are for his ADD symptoms) and Protandim. We had him on Juven but found he always felt like he had to urinate so it was too irritating to him to continue taking it. He also takes Deflazacort (we pay about $60.00 for 180 tablets from of local children's hospital) and Ramipril (an ace inhibitor to provide protection to his heart - which has not been affected so far - he's on it proactively).

As well as meds, he is in ankle-foot orthosis which he wears each night and he gets daily stretching.

We are very pleased with how he is doing physically. At almost 9 he walks flat footed, he can run, hop, and ride a bike. He climbs stairs on his own but anything over 4" he does more slowly and holding the handrail. He tires fairly quickly but given that his favorite activities are TV, computer and looking at books, that's not much of a factor although it does bother him that he cannot keep up with the other boys at school.

At school he has a 1-1 educational assistant for his behaviour and learning challenges (he has ADHD and developmental dyslexia) and he is withdrawn from his class most days for help with spelling and reading for about 1/2 hour.

He just stared medication for his ADHD so hopefully that will start to improve. His doctor put him on a very low dose to monitor his heart but hopefully on Wednesday we will be putting him on a dose that is more likely to have a therapeutic effect (fingers crossed).

We do get a grant from the Ministry of Children, Family and Community services that pays for his summer camps, Cubs, respite care, music lessons, house cleaning...basically anything that he can do that will help him physically or socially and make sure that we don't go insane trying to keep things under control. We got that funding before he was diagnosed with Duchenne when we thought he had autism (at 2 1/2). I'm not sure we would have qualified so easily if the first diagnosis had been Duchenne but they haven't kicked us out even though I send them yearly updates on his progress.

It sounds like you are pretty well covered as well Naomi. I know we can get funds for home renovation but like Marion, we live in a bungalow so we don't have much to do. Someday we'll have to do his bedroom and a bathroom but hopefully that will be down the road a bit.

Is anyone planning to go to the PPMD conference in Atlanta in June. I've been the last 4 years and it is fantastic. I was going to miss it this year but now that it is getting closer....I am rethinking that decision. Just have to see if I can get it organized. It would mean missing the last day of school for the kids and I usually like being home for that but it would be for a good cause.

Anyway, I'm enjoying this group....hopefully we will grow in the coming months. I think networking and sharing information is possibly the most powerful thing we do for our boys and the community.

I've already met Steve and Marion so I look forward to meeting Naomi and Raquel one of these days.

Take care,

Take care,
Comment by Marian Lamberson on March 8, 2009 at 2:29pm
HI Naomi,
They take a good multi vitamin, an extra 1600 mg Vit d, co q10 twice a day, omega 3, and the oldest takes deflazacourt. Mathieu who is seven, is still very active, although he does not keep up with his peers, he still plays in the snow and enjoys sports very much. We just bought a hi ranch, right now we are in a townhouse, which is proving to be difficult for all of us, we carry Matt up the stairs at the end of the night, when he is exhausted.
We have had alot of support here as well. We have something called OHIP (Ontario Health INsurance Plan) virtually covers everything. My husband is originally from Texas, and says families out there have to pay for everything. I couldn't imagine having to also carry that burden.
Right now I pay for his steroids, only because we have them imported from the UK. We decided against prednisone, just for the side affects, and this one, although not covered, workds very well for our little man.
Not sure what a maclaren stroller is? Going to google it...we would need something like that for long walks...
Take care, and keep in touch!!
Comment by Joshua's mom on March 7, 2009 at 11:35am
Hi Marian,
Do you, in Ontario, have virtually the same aide as we do in Manitoba? By that I mean being able to deal with CFS, CSS, SMD, and the Reahab Centre. We`ve been dealing with them since Josh was 3. They each contribute funds to pay for supplies, renovate your house, and provide anything you need including workers whom come into the house and look after the kids while you and your husband go out for a night.
Josh is 6 now and we are just in the midst of getting him a maclaren stroller and a disability parking pass. We live out in the country and managed to have gotten a disability school bus in 3 months.
Have you got your boys on supplements and medications.
Comment by Marian Lamberson on March 7, 2009 at 9:40am
Hi Naomi, We are in Ottawa, Ontario, and we attend CHEO (CHildren's hospital of Eastern Ontario). Hope your little one is doing okay...
can't wait for summer!
Comment by Joshua's mom on March 6, 2009 at 11:59pm
Does anyone doctor in Winnipeg with Dr. Cheryl Greenberg? We live just outside of Winnipeg... is anyone close to here? I only know a handful of people whom are involved with the Southern Chapter. Where is everyone located?

Comment by Penny Pratt on February 23, 2009 at 11:52am
Just to introduce myself. My name is Penny and I have 2 children. My son is 17 years old and has duchenne. He was diagnosed at 6 years old. Has been in a wheelchair since he was 12, he just went through having back surgery to put a rod in it and is doing great. My daughter is 11 years old her name is Raquel. Glad to have this group and PPMD.
Comment by Steve Beaulieu on December 4, 2008 at 3:55pm
Thank-you PPMD for the great site. Canadian families, awsome. Keep it all going. Beaulieu Family
Yukon Canada

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