Started this discussion. Last reply by Mirtha Aug 24, 2015. 1 Reply 0 Favorites
Started this discussion. Last reply by Ofelia Marin Oct 18, 2012. 2 Replies 0 Favorites
Started this discussion. Last reply by Mindy Sep 23, 2009. 4 Replies 0 Favorites
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It's been a week. Wanting off the DMD rollercoaster. We did finally get everything worked out with starting the OLE. We leave Monday for morning for our first trip. It's just paperwork and baseline testing (since it's been more than 90 days since Sam's last dose). Next week he gets his first dose. We have to be there Monday through Thursday for all the blood draws after. Going to be missing lots of school, which I hate, but they're being really good with it and keep Sam caught up. Did you see the FACES meeting for this Sunday was postponed?
Hi Mindy,
I saw your Facebook page was gone. I hope everything's okay?
Laurie
http://cshcn.org/care-notebook-and-care-organizer-order-form
I read your post about worring about your son looking like an 8 yo later on if on steroids. Our son Jacob has been steroids now for 10 years. He is 17 1/2. He walked until he was 15 1/2. When he went on growth hormone in addition to growing to 5 ft and losing wt he also lost the cushingoid sx such as the puffy face. He is also on a testoserone cream and is now in puberty...ie growing chest hair and facial hair. He looks much older. He is very glad to no longer look like a 10 yo. He is also been able to stay on deflazacort with its benifits. I don't get on this site often so feel free to email me at cgunval@gvtel.com if you have ?s.
Good luck,
Cheri
fyi - Did you do IVF or PGT recently? I saw posts to you on that? I did PGT/IVF in Sept 06 and no baby. We tried again 3 months later and had healthy twins (boy/girl). Good luck.
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