Hi Amit,
To answer your question about the medications Jordan is taking:
Deflazacort
Lisinopril
Eplerinone
CoQ10
Vitamin D
Fosamax

We're going to start him on Protandim Monday.

Have you found anything else to be helpful?
Donna

Hi Amit,

Simon has a mobility scooter which he uses only for school field trips or family outings where there would be too much walking for him, because he does get tired (like the zoo or an amusement park). Or say if he spent most of the day at a birthday party running around, then he would use it for our nightly family dog walk. But he goes to school everyday without any aids (except a cart on wheels to carry his stuff from one classroom to another), does the 2 flights of stairs several times a day, rides his 2 wheel bike on flat streets without hills. He does waddle, and sticks out his tummy, but does not do the Gower movement anymore since starting Deflazacort, and he can jump a little bit. He swims well but can't really follow formal lessons anymore, can't do the required laps, etc to progress to the next level. He goes to Scout camp in the summer with his scooter. His calves have increased in size this past year, but nothing else has really changed. His neurologist and rehabilitation doctors are very impressed with his abilities.

How is your son doing, and the family?

Good energy to you,

Andrea

Amit,

If you call 1-888-894-1374, the clinical concierge/guest services center can fill you in regarding charity flights. So far, we have not used these services. 

 

Amit:

Was your son just diagnosed?

Liam turned 11 last November and has a deletion of exons 48, 49 and 50 - in frame.  We await the exon 51 skipping trials to come to some fruition.  We got the diagnosis when he was 8 and a half - fairly late in the game.  We could not believe it because he had no glaring symptoms of DMD.  We first started him on Prednisone which was horrid and he had a bad reaction to it, so we switched to Deflazacort and have been quite happy with it - as to side effects. I really hate steroids.  We had a biopsy done when he was 9.5 which showed DMD and less than 3% dystrophin production.  When we began the steroids, there was no significant changes in regard to strength and stamina as is seem with most children.

Today, he is 11 and is still fully mobile - used no devices what so ever - which is rare.  He runs, jumps, swims, rides horses - and is just a spectacular kid. He is an A student in school and really loves life. The key to our family is that we never show our unhappy DMD sides to Liam. He thinks we do not care and that in turn affords him a very happy childhood. He, at this point, doesn't care that he's got DMD.

Tell me all about your son and what you do for him.  I like to hear what others offer their children and how they are fairing.

Thanks for the message.

Noreen

 

Hi Amit,

Yes, we're in the Houston area (Montgomery).  We have a pretty good network of parents here in the area.  If you give me your email address, I'll add you to our mailing list for when we get together.  My son is 8.  He was diagnosed just before his 3rd birthday.  Right after diagnosis is the toughest time.  If you ever need to talk you can give me a call.  My number is 936-582-1537.

--Laurie

Hi Amit this is my email id ashok.laishram@gmail.com

Armit,

I just read that your son was diagnosed just 2 weeks ago. I am sorry for what you are going through. The PPMD community has been a huge source of support over the years. I know you will find the same support that we have.