My son is on Deflazacort every other day and we are having some increased anger and outburst issues at school. I am wondering if anyone out there gives the steroids at dinner instead of breakfast to cut down on these behavior side effects. I know you are supposed to give them in the morning, but is anyone bucking this conventional wisdom??? With the Deflaz these outbursts are pretty mild but it is uncharacteristic for my usually happy kid. Thanks all!See More
Hi everyone, I would appreciate any pointers regarding speaking to 2nd/3rd grade students about sons MD. We are bringing his chair - show and tell still works with this age range, but how do I introduce them to William, his chair and why he uses it?Thanks in advance.Anne H.See More
I am sorry if this question was posted previously.My 7 year old son is still ambulatory, but over the summer we got a wheelchair for family outings and such. We are having an IEP review meeting tomorrow and the school PT is asking that the chair be brought in to school so they can use it. She is concerned for his safety; he is not always watching where he is going and is easily distracted. About a week ago he fell on his way to the cafeteria because he tripped over another child's foot who was…See More
I know I sent this message to the group and I apologize now for the cross posting, I am very new to the group. I really wanted this to be an open discussion so I am posting it here tooIs anyone interested in attempting to get our boys together and have a playdate-esque sort of event? (I am in Melrose) When I say event I mean low key outing where the kids can meet and see others just like them. My son is 7 and I think it might be the right time to do this. I think seeing that he is not the only…See More
I live in the Boston area. I am a former archaeologist who makes a living as a reference librarian at a small liberal arts college in Boston. I love my family and enjoy spending time with them. If I could get off my rear and do something, I would rediscover my art abilities and take a watercolor class. And if money grew on trees I would stay in school FOREVER and gather many more degrees. I love learning!
About my family:
My son William was diagnosed with Becker's MD in Janurary 2007. Since then, he seems to be tracking more along the lines of Duchenne MD. William started on Deflazacort in April 2009 and we think we are starting to see some benefits (it's now August/September 2009). Fingers crossed. My husband has rediscovered running and plans on running for the Jett foundation team in a Dualathon.
Name(s) of child(ren)/individual(s) with Duchenne: