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Started this discussion. Last reply by amit gupta Feb 24, 2011. 12 Replies 0 Favorites
Hi everyone! We are having to start our son Ben on Zantac but I am unsure of when to give it to him. Is it only effective if given in the morning before breakfast and steriods? Would it work as…Continue
Started this discussion. Last reply by Ofelia Marin Jan 18, 2011. 13 Replies 0 Favorites
Has anyone has been waiting a long time for their Deflazacort shipment to arrive? Our order shipped on Dec. 3 but we have not received it! I was getting nervous and ended up calling Julie at…Continue
Started this discussion. Last reply by Donna Oct 28, 2010. 1 Reply 0 Favorites
Hi all. Have any of you have seen a big weight gain in the first year of taking Delflazacort? My son is 4 and has been on deflazacort for about 4 months now. Yesterday we were at our regular doc…Continue
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My husband Jason did tell me he met another family with a 6 year old, but he couldn't remember your names, so I'm glad you followed up! We actually have 3 sons with DMD, Max, the one you met yesterday is the oldest. Then we have Rowen, 3 and Charlie, 14 months. Then we also have Lexi,10 and Chance, 4. We are pretty busy, but love having a big family.
I see you friended me on Facebook too, I look forward to getting to know you better!
Thank you for responding to my new member profile. I would like to talk with your mom. I think it would be nice to have a local connection to someone with a similar situation. Karen
Thank you Jessica I just found ppmd. And it is a lifesaver. I have a friend who went out of her way to find resources for me. So thanks to her I found more support.
Yes I know the center!! Very close!
If you ever feel like emailing me outside of PPMD, my direct email address is email@example.com.
The families I spoke to when I first found out were Sophie Smitzel and her son is Logan. They live in Aurora. He will be 11 this year and she is very very involved with MDA. She also told me to go to PPMD website to get other answers. I first spoke to Chris Hyatt. Her son LIam is probably 8 or 9 this year and live in Sandwich I believe now. She and her husband are extremely funny and she was so very helpful to me when I had a ton of questions.
It would be great to meet with you and Ben. I know Nicolas would love to meet Ben.
It shouldn't take you too long to get in to see Dr. Wong. It wound up taking me only 3 months when I first found out. It's exhausting to go there for 2 day long visits, but I always feel like I'm accomplishing something by seeing her and her team. Plus, it becomes a mini vacation for us!!
It would be great to keep in touch with you since you are so close!! Have you spoken to any other families in the area? By the way, Ben is absolutely BEAUTIFUL!!