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Eunice Lunsted
- Female
- Dauphin, Manitoba
- Canada
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Eunice Lunsted's Discussions
Gastrostomy tubes
Started this discussion. Last reply by Eunice Lunsted Sep 21, 2009. 5 Replies 0 Favorites
Eunice Lunsted's Page
Profile Information
- About me:
- I am the mother of 2 boys. I work as a public health nurse . I like to garden and spend time with my family.
- About my family:
- Our family of 4 consists of 2 boys ages 17 & 20.
- Name(s) of child(ren)/individual(s) with Duchenne:
- Chad
- Age(s) of child(ren)/individual(s) with Duchenne:
- 13-18
- City:
- Dauphin, Manitoba
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We just saw Dr. Greenberg on Wednesday and she told me what happened to Chad. I'm so sorry. I just had to let you know we are all thinking of you. Take care.
Naomi
Naomi
(P.S.) We met at Deer Lodge 2/3 years ago. I remember you and Chad!
Take Care,
Naomi
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...
Many Blessings, Cori
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
Take Care,
Naomi
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!
CATENA http://www.hc-sc.gc.ca/dhp-mps/prodpharma/notices-avis/conditions/catena_fs_fd_117672-eng.php
IDEBENONE http://www.smartnutrition.info/idebenone.html
Take care of yourself as well as your son,
Naomi