hi holly, just checking in, about the prosensa trial. we are in columbus, our last appointment at the hospital is monday morning. wondering if you guys ended up in the trial, and if you are here now, austin wished to have met more boys here. hope all is going well

The trial Andrew was to be a part of has been put on hold. Disappointing, but what can you do. We are hanging in there. Hope you are too.

Hi, Holly. Thanks so much for your last reply. This is a very hard stage obviously!! I've been shocked and scared, and really freaked out when he does this. It's great to hear about other's experience w/the same thing. Makes me feel less alone.
A couple more questions....
Did you already have everything set up in your house by the time Tyler was to this point? The biggest problem we're having right now is that our bathrooms are not accessible to his chair. The medical supply company is supposed to be contacting me, but for some reason I still havent heard from them. I'm wondering what it's going to cost to get my house completely accessible for him in his chair. And, if there's any help in paying for it....

How is Tyler and your family? Hope all is well!!!

Hi, Holly. I hope all is well. I had a question I hope you may be able to help with. Austin recently had two days in a row when he could not walk or stand at all on his own. Then the next morning he walks out of his room to the kitchen and pours his cereal... Again, tonite, he started doing the same thing. I'm thinking tomorrow may be another day like before. Have you ever seen or heard of this before? I have called the Dr and talked to the nurse to explain the situation, and I am still waiting for another call back. Any help or advice is welcome!! Thanks

Thanks for asking about the trial. As of now we are still waiting for dates to be set. Aparently it takes a while to pull these kind of programs together. I will post when we hear something. Take care.

Hi Holly. I'm not sure if they are still recruiting patients. If you are interested in the study it would be worth it to contact them. I do not believe that the study has begun, as they were interested in having Andrew participate in the study. I am just waiting to hear from them. Take care. Jennifer.

OMG, yes, he does not stop talking!!! lol, Austin takes Focalin XR 15mg. He has taken it now for 3 1/2 yrs and it works well. He is very impulsive vocally, and acts out vocally to get his attention since he cant burn all his energy physically. He's really a very funny child but will drive everyone around him crazy once his meds have worn off for the day.

The Focalin is a 10hour medication so, he takes it about 6:45am and it's wearing off about the time he gets out of school, so, we still deal with all of the talking in the evening. I also think Austin may be OCD... Which is the cause of so much anxiety for him. Hope this helps.

Holly thanks --thats what I was thinking too. I appreciate the resource of someone who has been there

Holly-- thanks for the note. My son does not know he has DMD at this point--I know in time he will ask question but he is happy now and I dont want that to change until it has to. Tyler is Im sure really having to manage alot. At what age did he start questioning?