Comment

Comment by Roman Litwinchuk on December 8, 2009 at 10:13pm

Hi, I'm Roman and I have a handsome son, Zachary, with DMD. Zac is 13 years old and is still ambulatory. I am married to Irene and also have a beautiful daughter, Cassandra. We live in Mississauga, Ontario and we attend ErinOak Kids for Zachary's support. I am interested in staying connected in order to be as informed of medical developments as possible and to help and seek help from this group.

Comment by Debra Chiabai on December 7, 2009 at 5:25pm

Hi Leslie,
I have a son who is 9 1/2 who was diagnosed with DMD at age 2 1/2. I live in Ottawa but have family and a cottage near Kingston.

Welcome to the group. Feel free to get in touch if you want to talk to someone "local".

Debra

Comment by Joshua's mom on October 5, 2009 at 11:47pm

Marion,
If you look below at our last post you will see the web sites I put so you could look into it more. I hope it helps.

Naomi

Comment by Marian Lamberson on September 25, 2009 at 7:21pm

Debra, did you find more info on Idedebone? I would be interested to pick your brain about it.
I will see you on Tuesday at the meeting and hopefully i can absorb some wisdom!!
Can't wait to see you momma!! xo

Comment by Penny Pratt on September 24, 2009 at 10:46am

Hi Jason,, Is your son get a disability cheque.. If so you should be able to send your receipts into them and get reimbursed. I would pay for my son's then send in the receipts for any drugs that are not covered by insurance and they would reimburse me for it..

Comment by Marian Lamberson on September 24, 2009 at 10:38am

Hi jason, we also pay out of pocket, no chance having it covered. We have Standard Life and they say NO...it is not as expensive as we initially thought, i guess cost doesn't really matter at this point. I hope your able to find a company to cover it...let me know how it works out!! Take care!! :)

Comment by Debra Chiabai on September 24, 2009 at 9:25am

We pay about $60 for 180 tabs. It used to be less until they raised the price. You are unlikely to be reimbursed. Great West Life won't cover it because it is an investigational drug. I even tried sending them some studies about it. If you have another insurance company, it's always worth asking. Let us know if if works out.

Comment by Jason G on September 24, 2009 at 9:20am

Just wondering if anyone has had any luck getting Deflazacort covered by insurance or are you paying out of pocket? Our pharmacy said since its not an officially recognized drug in Canada we probably won't get reimbursed by insurance.

Comment by Debra Chiabai on September 20, 2009 at 11:25am

The price does not sound too bad when compared to what we are paying for CoQ10. Thanks very much for the additional info. I'll definitely look into it since I have been hearing good things about idebonone.

Comment by Joshua's mom on September 20, 2009 at 10:32am

Debra,
With shipping, taxes and trade it cost $347.00 for a year supply. When taking idebenone you don't have to take coQ10 because it is a stronger strength of it. I'll give you the Canadian site to explain it and the other site where we bought it because of the price difference. Joshua too used to take coQ10 for 3+ years as well until we switched.

http://www.hc-sc.gc.ca/dhp-mps/prodpharma/notices-avis/conditions/catena_fs_fd_117672-eng.php to understand what it is and

http://www.idebenone.info/ to purchase. Otherwise you will be paying $20,000.00!!!

Naomi

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