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.
We like both, but may move fwd with Jake's treatment with Dr. Tseng. He has a really pleasant "bedside manner" . Darras is very knowledgable, but some same his bedside isn't as soft. We've had no problem personally, and have been pleased with his care at all our visits.
JB is 16 months, they caught it on a blood test that showed a CK level of 14,900. He had his DNA test completed before Christmas and then we foundout he had duchennes. He had been slow to milestones particularly gross motor development but we went to see Dr Minster at Childrens for a strange swallowing issue. We are heartbroken but thank you for your support.
Welcome. How old is JB? I have a 3 year old girl (soon to be 4 next month) and my little guy w/ DMD is 15 mos. We are in Haverhill, MA. Are you going to Childrens or MA Gen? We are at Childrens, but looking into going to both places. We just found out too, in Dec. The initial shock is waning, but still very difficult. It does get better though.
HI Jeff, welcome to PPMD! U I am happy you found us, sad to hear about the little one though. I am a carrier mom of 2 DMD boys. They were sent from heaven for me. How is JB doing? My youngest is 20 months and has no symptoms yet, but my 7 year old has braces and taking deflazacourt and a recipee of suplements. How is your wife doing? I know I took it pretty hard in the begining, but you get over the initial shock of it all, and it almost becomes normal. We found out in July that our boys were affected...
My husband has been having a hard time, but he is my rock, so I thank God for him...we just bought a bungalow to make it easier for the boys to get around...the stairs have proven to be difficult for my oldest.
If your wife wants to talk, or needs someone to guide her through this hell of a thing...I am here. Keep faith that we will find a cure.
Oh, btw, you'll get to know Christine McSherry with the Jett Foundation soon I'm sure. We have a group of parents with kids in the 1-6 range that meets periodically for kid friendly get togethers in the Boston metro area.