Eileen, I'm so glad to hear I'm not alone!! Sometimes I feel like I'm the only person in the world who made the choice I made. I too am so happy to have my little sweeties. My uncles always said they were happy and had great lives -- I just hope my Max feels the same way!
I wonder if I'm a manifesting carrier too. I'm quite clumsy and the opposite of athletic, but my calves have always been on the small side ...
My name is Pilar, my son is 11 years old, he is deletion 13-17, i wonder if you could email-me the link about the article you mention about deletion in this areas of the genes? i really apeciated. I'm glad to join the forum i have been feeling pretty lonely ,with my son's condition. by the way, i'm from new jersey...and i have 2 other boys .12, and 4 years old..
Thank you, Eileen. Colin is doing great so far! We are hoping to start on deflazacort soon, but wondering we should wait until we get an appointment in Cincinatti. There's so much to think about! That's good to know about the exon skipping. I wasn't sure if skipping 8 would work for a 7 deletion. I hope so!
We have family in New Hampshire (Charlestown/Claremont), so if we come visit again, we'll look you up.
Your boys look wonderful in your pictures-it's great to see older kids with DMD looking so happy and healthy! Colin is a very happy boy, and I am hoping to keep him that way! Thanks for your message!
I didn't know you had a green thumb! I grew up in a family where all of the women loved gardening. When we got together we spent more time outside walking the yard than we did in the kitchen. Unfortunately I have a tiny postage-stamp sized yard so it doesn't require much work. To make up for that I got on the landscaping committee of our HOA and I've been busy getting our new neighborhood sign/pocket park finished.
Great to hear from you. Did you make it to the conference in Atlanta? I was so disappointed that I couldn't go. I took Jordan to see Dr. Wong in early July and his results were very good...heart and lungs are still strong (PFT better than last year!), strength tests, everything was same or better except his hamstring flexibility. He's not good about doing stretches and now that he's a teenager it's harder for me to force him to do anything that he doesn't want to do. How are you holding up?
my son is deletion 8-11, but his symptoms appear mild right now (he's only 7). However, I was wondering if you could send me the link to the article you mention about deletions in this area of the gene? Is it by Dr. Flannigan? I saw mention of one somewhere else, but haven't actually seen the article yet.
Hope all is well.
My son's are older. While we have had a great relationship with the MD Clinic Pediatrician, we really haven't received the kind of information you all seem to have with Dr. Wong. My younger son has had tendon release, tendon transfer and spinal fusion. How would you/have you worked out the logistics of pre op, op, post op exams over the months when in another state? What about things such as night splints, seating and wheelchair tweakings? We have always had a local pediatrician, and then drove 1-2 hrs to clinic location for followup on equipment/disease related issues.
If other needs develop, how do you work out the logistics? (We're in Eastern PA).
Hi Eileen, I feel like your family since we have the same deletions 3-7, We see Dr Wong next week and I can't wait to see what she has to say. I noticed your boys are on Steriods what kind of changes have you seen? Our Houston Dr doesn't seem to think our son requires them until he is weak. He told us to let him be a kid and he will self regulate what he can and can't do. I have so many questions for Dr Wong, I was left wondering about alot of things when we saw the Neruo guy here at the MD clinic. I'm looking forward to getting lots more info from Dr Wong as everyone else that has gone has testified to. Does it seem our main worry should be the cardiac problems with the 3-7 deletions? Any info is great appreicated.