Glad you found this forum. You will learn alot here. I also live in MA, in Mansfield. My son with DMD is 7. He was diagnosed at age 5. If I can help in any way, please let me know. I am currently in the process of getting some of the younger boys/families together in our area for a play/social time. If you are interested, please let me know. I look forward to meeting you at the MGH Round Table on Saturday.
Hello Jeff... Welcome to the site, unfortunately. I grew up in Lynn, MA and my parents still live there. I noticed one of JB's grandparents live in Saugus... (Maybe you can keep my parents informed of any DMD related events happening on the North Shore... ;-)
We have two sons 5 and 2 who were diagnosed with Duchenne in June 07. Our oldest, Elliott just started in the PTC124 2B trial...
Wow! Our kids are on the same path aren't they! Keelan has early intervention for late motor milestones and 'food aversion'. He would gag and projectile vomit on things like a Rice Krispy. He's ok now, but from 6-14 months, it was really bad. Dr. Kang works under Dr. Darras and is very, very nice. We're still going to go to Mass Gen. if possible too. Already having problems with our insurance. Go figure!
BTW, my son had some swallowing issues as i recall, around 8-18 months. Particularly meats. We kept him to pasta, overcooked veggies and mostly food-processed meat mixed into sauces during that time. He got past it, but still sometimes doesn't chew thouroughly enuf (i think b/c his jaw gets tired) and then gags.