I know I am a day early, but I saw your post about the G-tube and your son and although I have no experience with this, I just want to tell you that you will be on our families minds and in our hearts, we wish you the best...
I'm glad you liked him. He's very informative with any question you have. We did order on-line, or you can call them, and where we ordered we didn't need a prescription and we ordered what we needed. What ever you order, it will come in the mail in packages of 2 and will come over a little bit of time. They do it this way so it doesn't get stopped at the border. If they send it in one package it will probably get stopped at the border and take longer for you to get it. Dr. Skalski will let you know how much he will need if you want to give it to him. I'll give you my phone number if you have anything you ever want to talk to me about. You can call at any time. 204-375-6678
It's great to talk to you! Joshua sees Dr. Greenberg too. Whenever we have questions for her, we just e-mail and she e-mails back a response to whatever we asked. It's great to communicate with her, she's a fabulous doctor!
As for the idebenone, Joshua has been on it for almost 2 months now. We've seen a difference already with the amount of energy he has gained! Dr. Monson (his neurologist), has retired so we now have a new one called Dr. Skalski who came from L.A. so he could get Catena (idebenone) because it is FDA approved in Canada and he wishes everyone with DMD could be on it. It's $20,000.00 per year for the Catena though so we had to go with the generic name and order it from the U.S. for $347.00 in Canadian and including shipping. I'll give you each site so you can go and see yourself. The first one is what they want us to have and the second one is much cheaper!
Hi there Eunice, I'm not from Dauphin but was born in McCreary where family still lives. How do you like the area for you boys? Right now we live just outside of Winnipeg. I hate to be any further than 1 hour from Health Science Centre. Have you met many others from Manitoba or your area to be friends with? Take care...Naomi