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Mother of 6 yr. old with DMD   Message List  
Reply | Forward Message #18199 of 22648 |
Re: [MD-List] Mother of 6 yr. old with DMD

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.
----- Original Message -----
Sent: Thursday, March 02, 2006 10:19 AM
Subject: Re: [MD-List] Mother of 6 yr. old with DMD

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 support and that i am sorry you too have to go throught this devastating disease with a love one as is your little boy.well when ever you need to chat or need to know something i can help you with feel free to ask.
 
jackie

kellyjan1999 <SUNSHINE210730@...> wrote:
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 someone with DMD or family member to get
more information and support.






Thu Mar 2, 2006 7:59 pm

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gabby293
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Forward 		Message #18199 of 22648 |
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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... 		kellyjan1999
Offline Send Email 		Mar 2, 2006
6:10 pm

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...
Jackie Torres
swpea503
Offline Send Email 		Mar 2, 2006
6:20 pm

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...
AV
raybug10
Offline Send Email 		Mar 2, 2006
7:13 pm

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...
Joanne Wechsler
jowechsler
Offline Send Email 		Mar 2, 2006
6:52 pm

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:...
nuncastro@...
gabby293
Offline Send Email 		Mar 2, 2006
7:56 pm

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...
nuncastro@...
gabby293
Offline Send Email 		Mar 2, 2006
7:59 pm

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...
Adele
navymom2josh
Offline Send Email 		Mar 2, 2006
9:29 pm

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,...
Vikki Stefans
vstefans
Offline Send Email 		Mar 4, 2006
3:52 am

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...
Adele
navymom2josh
Offline Send Email 		Mar 4, 2006
2:03 pm

Wow I had not heard that approving Deflazacort is in the works! That would be wonderful....then we can get insurance to cover it instead of paying ...
Diane
dianeproc
Offline Send Email 		Mar 4, 2006
6:40 pm

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...
Adele
navymom2josh
Offline Send Email 		Mar 2, 2006
8:27 pm

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...
nuncastro@...
gabby293
Offline Send Email 		Mar 4, 2006
3:55 am

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 ...
SUNSHINE210730@...
kellyjan1999
Offline Send Email 		Mar 5, 2006
5:56 pm

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!...
Adele
navymom2josh
Offline Send Email 		Mar 5, 2006
10:01 pm

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...
The Rileys
bry_dmd
Offline Send Email 		Mar 5, 2006
10:15 pm

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,...
nuncastro@...
gabby293
Offline Send Email 		Mar 7, 2006
2:44 am
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