Hello - I work with a genetic counselor who specializes in md and here is her response to the question Lanae asked about LGMD. Thanks Marie ... From: Gordon,...
Hello Everyone, My name is Kelly. My 6 year old son Thomas was diagnosed in July of 2005 with Duchennes Muscular Dystrophy. I am interested in chatting with...
Hello: My Name is jackie and my son johnell has dmd, his 61/2 years old and already on steroids, i first wanted to tell you that you are in the right place for...
Hi Kelly, You came to the right place. Lots of parents here with children with DMD. My son is 9, diagnosed when he was 3. It's been a tough journey, one I...
Hi Kelly. I am Anneliese and my son Raymon is 14 with DMD. You have found a super place for support and help. It is scary when you first hear the words...
Thank you for your help with my q's Lanae Never underestimate the power of a kind word or smile From: MD-List@yahoogroups.com Reply-To: MD-List@yahoogroups.com...
HI KELLY, MY NAME IS GABBY AND MY SON AND NEPHEW BOTH HAVE DMD. THEY WERE BOTH DIAGNOSED 6 YEARS AGO AND WE CAN TELL YOU WHAT YOU WANT TO KNOW? ... From:...
HI, MY SON WAS ON STEROID BUT IT DID'NT WORK FOR HIM JUST MADE HIM REALLY FAT AND EVEN WITH PROPER DIET,HE STILL CAN'T LOSE THE WEIGHT. ... From: Jackie Torres...
Hi Kelly and welcome to the list. I'm Adele and my son Jason is now 20 and has DMD. We live in Maryland. Please feel free to ask any question to anyone on...
I would like to ask a question. How do you know that the Steroids "didn't work"? As for the weight loss, it may never come off. The only way is did for my...
I have some kids with this in my clinic, and what I can tell you is they are very different from Duchenne, they start weaker but don't get weaker as fast in...
Steroids generally "work" and they now recommend reduced doses which provide some though not maximal benefit for anyone who is having a lot of side effects,...
THE DOCTOR TOLD ME IT WAS SUPPOSE TO HELP HIS MUSCLES, TO KEEP THEM STRONGER AND HELP HIM IN GENERAL BUT UNFORTUNATE IT DIDN'T MAKE ALOT OF DIFFERENCE, HE WAS...
Hi All- I was wondering if anyone else with DMD has gone through cataract surgery? My son, Brady, is 12 1/2 years old, and has been on Deflazacort for 6 1/2...
jenkins5
jenkins5@...
Mar 4, 2006 4:10 am
18206
hi Heather I'm Betsy and my children Kevin, 18 and Karly, 14 both have CMD. We never had further testing as far as merosin deficient or not. I can tell...
MzBet@...
Mar 4, 2006 4:33 am
18207
Hi Dee- There is some good info on anesthesia here http://www.doctorbach.com/er.htm. I haven't found anything about cataract surgery in DMD, but it's a very...
Vikki. I'm not sure where I heard this, but it is from a creditable source that the FDA will be approving Deflazacort in the not too distant future. You all...
He has an ileus. I feel a bit better now that I asked specific questions and then found out that this is common after surgery. The worry I was having is if...
Terri, I'm glad to hear that Alex is doing better, but sorry about the other issues. I hope you get to go home soon, so you can get some normalcy back in your...
Thank you everyone for your Letters of support. It feels good to be able to open up express my concerns and questions with people that have and are going ...
Kelly. A lot of us went through years of taking our kids to the doctors because we sensed something just wasn't right and been told that they are just fine!...
Hi Kelly- My little boy is the same age as yours. The neurologist we took him to heads the local MDA clinic, and he, too, missed the diagnosis, though he...
My grandson who turned 8 in January was in Sunday School today, and the teacher was teaching the group about prayers. She had each child say a prayer. When it...
Your grandson certinaley has the spirit of Christ with him, it is awesome
to have a prayer for the goat, God Bless you for sharing and him also, keep
us posted...
HI, I am needing some sympathetic ears This week has been a tough one - I had to call 911 early thursday morning due to pain on my left side, arm, ribs ect.. I...
YOU CAN ALSO TRY APPLESAUCE AND HIGH FIBER CEREAL FOR CONSTIPATION. GABBY SON OF A 11 YEAR OLD DMD ... From: Adele To: MD-List@yahoogroups.com Sent: Sunday,...
