I would love to get together! Do your children attend Northwestern? Lance does. I'll try to shoot you back an email so that you have my cell #. I looked at your pictures. We were at the plane pull too! ;-)
I don't think that one medication works better than another. You can always try a different one, but Focalin tends to work as well as the others. An amphetamine-based medication like Adderall or Vyvanse is chemically different than Focalin, so it might be worth a shot. Are you sure you've tried a high enough dose?
I haven't been on here in a while either and recently changed my email so I just got your message. Glad things are going well with your son. Michael is doing well with his night splints and the therapist feel that his rang of motion is good at this time. We go tommorrow for our 6 month f/u @ CHOP. Sunday's are usually good. Are you going to the meeting for PA families? I live 5 minutes from the Quakertown airport. If you are going we should meet up and set a date to get together.
I see you live in Kempton which isn't too far from Quakertown. Would you be able to join the PA familes in this area to help with the fundraiser in October? We will need people to man the ticket table and the games.
If so please email me at firstname.lastname@example.org so I can put you on the mailing list.
My name is Niccole and I am also a RN. My son Michael will be 3 next month and was diagnosed with DMD in May. Not sure where Kempton is in relation to Quakertown but I see you go to CHOP. How are things going with your son and family. Haven't been on here in a while My denial phase is coming to an end and reality is setting in since we put the nightime splints on him. Saw that your son was going to have the casting. Did it work??
Hi Jessica! Thanks for the message. When is your son's birthday? I noticed you said he will be 7 in two weeks, and my son will also be 7 on January 15th. I would love to touch base. We go to CHOP in Feb for 3 mth steroid follow up. I have not really noticed much difference at all yet. I did just start giving it to him w/breakfast instead of dinner, which seems to be helping him sleep later. B/f he would go to bed ok, but he was getting up way too early, and then I was SO stressed about how he was going to get through the day. Is you son still running around and taking gym? Jordan is, but some of the other postings are making me wonder if I'm doing the right thing. I am just so sad that I even have to be figuring this out-- he knows he has muscles that are a little less strong, but we're just starting to explain to him that they get tired easier, too. He has always compensated in such a way that no one would ever notice that anything is going on with him-- including us. Only once it was pointed out to us did we see what was going on. In the meantime, his friends just think he is a slower runner, but he's also teeny compared to them.
Oh well, thanks for letting me vent, and I would love to catch up. My # is 510-388-3434