How is Ewan doing these days? Alexander mostly seems to be doing quite well but lately has begun to slow down. We are worried but expect the exam (cardio included) to provide more information. He turned 10 recently, is much heavier but not overweight from the steroids. We want to speak to the doc about switching to deflaz as well as the new viagra study that recently came out. It says viagra provides more blood flow to the muscles thereby decreasing fatigue in DMD. Have you heard about that one? Not sure how to handle that "side" effect viagra is known for!! But if it does help we can put up with anything.
Hope all is well with you guys. We are going to Univ of Utah in a week or so. You guys wouldn't happen to have your appt soon, would you? We are bringing the whole family and planning to stay a couple of days and find some "fun" somewhere there in Salt Lake.
By the way...I just read your response about public schools and couldn't agree more!!! We had run-in's very early on with our local district, then took our sons to private school. What a pain in the butt they can be. Sounds like Ewan doesn't need them anyway, good for him.
Just 10 minutes ago we checked our morning e-mails and found a response from KFlanigan about skipping exon 44. He said skipping just 44 will not restore the reading frame however skipping 44 and 45 will.
Thought you might want to have this good news.
I just read your message to Mary S. in the grief section. I am writing to you because my son, Alexander 9.5 years has a deletion on exon 44 and I haven't heard or read anything about that specific exon location being an important point for cardio problems. Actually, I read a research paper somewhere that said the opposit, that 44 wasn't located on a "hinge" and therefore cardio problems aren't as much a problem as other hinge locations. Could I have gotten that data mixed up? We have been seeing Dr Flanigan at Univ of Utah, actually been there 1x and will go again this month since our dx is new. Maybe I should ask him about it then. Do you guys see Flanigan too? Now I am getting worried!
Mark just got the Indiana Jones Lego XBox360 video game.Today, school is finished! It was a congratulations, "you survived first grade," gift. He's been playing it non-stop. The theme song is a pleasant change from the Star Wars theme. :)
Hi Jerry and family- nice family photo. I'm just getting on board here as a member...trying to learn my way thru this new site.
I'm having Mother Tea with Mark today at 10 am...hoping I won't get emotional.