Canadian Families

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Canadian Families

Members: 55
Latest Activity: May 16, 2018

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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 Debra Chiabai on September 20, 2009 at 7:32am
My son Alex takes Co-Q10 and has for the past 3 years and I do think it makes a difference in his strength. I have been watching information as it comes out about Idebenone to see if it was worth making the switch to see if it gave greater benefit. Alex takes a lot of other supplements so for now I will probably stick with what we are doing and keep watching to see if anyone else comments.

How much are you paying and what is the trade name of what you are buying so I can look into it further?

Thanks,
Debra
Comment by Joshua's mom on September 19, 2009 at 12:34am
I was curious if anyone is being suggested to take Idebenone. Joshua has been on it for one month already and there has been a great difference with energy et al. It is called Catena as well in Canada but it is too expensive for that one so we bought it from the U.S. instead. His new neurologist really believes in it and wow, I can see now why he does. Another mom and I shared a year supply so she could use it on her daughter with an active version of the disease instead of just being a carrier, and it has made a difference on her as well. This medication is newer so I wasn't sure if anyone else had been told about it and is taking it yet. Please tell me if you are. I'm interested in how it works for others too. Take care.

Naomi
Comment by Eunice Lunsted on August 30, 2009 at 6:15pm
Hi everyone in Canada! My name is Eunice and I am from Manitoba. Are there any other Manitobians?? My son is 17 1/2 years old with DMD, and was diagnosed at age 1. He has been in a wheelchair since age 8. Looking forward to talking to and getting to know some of you. Take care. Eunice
Comment by Marian Lamberson on August 26, 2009 at 11:53am
The oldest takes deflazacourt....1200 ui of Vit d, omega 3, and shark oil tablets. Some people have different opinions about supplements, i am of the opinion that if it might work, its worth trying...
Comment by Marian Lamberson on August 26, 2009 at 11:51am
Hi Jason, sorry to hear about your son. As yourself, many of us here have never thought of being a part of this either. We are in Ottawa, and see Dr. Pierre Jacob.
Both of our boys were diagnosed last year, and I have to say i don't remember much about then, except that life was falling apart. You will see it will become the "new normal". Try to take it in stride...adjusting to the diagnosis and this new world will be a heavy task, and you will find strengh in yourself you never thought you had. Mathieu is 8 and still runs, slowly, but still runs. He started school today, grade three. My 2 year old does not exhibit any symptoms yet.
We are all in this together and anytime you need to talk come here....you will find a tremendous amount of support!! Good luck and God bless xo
Comment by Jason G on August 26, 2009 at 11:10am
Well here's a group I never thought I'd be a part of. My son Joshua (7 in a couple weeks) was diagnosed in July. He's under the care of Dr Tarnopolsky at McMaster in Hamilton. They've been great. We had an appointment within weeks of his diagnosis and are going back again next week to see about starting steroids. Josh has started to have a real hard time with stairs lately.
So...hi to everyone
Comment by Jennifer Kember on August 18, 2009 at 3:13pm
HI Angela
Our 8.5 year old son David has DMD. He was diagnosed on his first day of grade 1 - just less than 2 years ago. He is doing very well on Deflazacourt. He sees Dr. Biggar at Bloorview in Toronto. He is an excellent doctor. I am a carrier but it does not run in our family either. Our 3 year old son does not have DMD and we have not had our daughter tested yet. I am available to help if you have any questions that I can help you with. Take care.
Comment by Angela Smith on August 18, 2009 at 2:56pm
Ben was diagnosed at four years old. He was just dianosed this April. DMD does not run in our family. Actually I am going to be tested to see if I am a carrier and our two daughters are now also going to be tested to see if they are carriers as well. I did not even know anything about this disease until now. I did not see this diagnosis coming.
Comment by Marian Lamberson on August 18, 2009 at 8:53am
Hi Angela, welcome to PPMD!! My boys were diagnosed last year in July, so we just hit the one year mark. Can't say i remember alot about the first few months, bu i am here, so it means i made it. You will find more strengh in yourself than you ever thought possible. I guess i just wanted to tell you that I am here for you.
Take care of your little Ben!! :)
Comment by Joshua's mom on August 17, 2009 at 9:24pm
Sorry to hear of the diagnoses! Welcome to Parent Project though. How old was Ben when he was diagnosed? Joshua is 6 1/2 now and was diagnosed at 6 weeks old. It does not run in our family anywhere, does it in yours? How was he diagnosed? Hope all is well, as us anything, we all try to answer and help!

TTYL
Naomi
 

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