Started this discussion. Last reply by MicahsDaddy Sep 19, 2008. 3 Replies 0 Favorites
Started this discussion. Last reply by Roderick Scott Sep 9, 2009. 9 Replies 0 Favorites
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Just joined deletions group, my Billy, age 9 as of January 6, has deletion of exon 52 and we are waiting for trial to clear and to start. But I was reading and old message by you regarding school and p.e. etc. We are in Pittsburgh, PA and I don't know what your state's laws are but should be the same according to ADA, your school must accommodate your son with an elevator. I've gone to battle with my school district since kindergarten, went to mediation, one step prior to suing. Billy is now in 3rd grade and things are much smoother now because I had to get loud in a tactful diplomatic voice but it worked and they are now very accommodating. Let me if you need info as you deal with your son's school. Good luck and stay positive, we are all in this together and will help.
:)
The boys are good though, Malaky (2), you could never know he has DMD, and Matt, my oldest (8), well we just take it day by day. We try and stay super positive. He is totally ambulatory, no assistance at all, but wears night braces.
We live in a city, with about 15 parents with children with DMD, and we have a wonderful children’s hospital which helps a great deal.
I have come to terms with the diagnosis, I believe I will never accept it, but I know in my heart that my boys were sent to me for a reason, and without them, life would mean nothing.
I will keep you and the boys in my prayers, and know that if you need anything, I am here…take care my dear!!
Just want to make sure you know your not alone...I remember waiting for my youngests results...It was gut wrenching...
Thanks for your note. Jordan is a very picky eater and does not eat much but here are the main foods in his diet:
-fish, grilled, mainly tilapia or salmon
-chicken, grilled or baked
-pasta with cheese
-baked potatoes
-fresh blueberries & blackberries
-eggs, milk, orange juice, kolaches
-Simply Lemonade-he LOVES this stuff, especially raspberry
-fruit snacks (Welch's & nuggets)
I push him to drink lots of water but he still doesn't get as much as he should. He takes the following pills & supplements every day:
-deflazacort, 22.5 mg, same dosage for 3 of 4 years (dropped from 30 mg)
-lisinopril
-fiber con, 2 tablets (he gets very constipated)
-CoQ10, 300 mg
-CitraCal, 4 tablets (2000 mg Vitamin D & 1600 mg Calcium)
-Fish Oil, 4 capsules
-Centrum Complete multivitamin
He also takes fosamax weekly for osteoporosis and it has improved his bone density.
I found it very interesting that when we were on our 2-week vacation he had a BM every other day, which is a lot for him. He usually goes 5 or 6 days without one. I think it was the result of so much walking. He normally spends hours every day on his computer and doesn't get nearly as much exercise, except for swimming, which we try to do every day.
I hope this is helpful. Let me know if you have any more questions. Always happy to share what we have learned.
Donna
Melissa
We would love to get together for a play date. I work during the week so it would be tuff to during the week, but maybe we could meet on a weekend.
I hope you had a good trip to see Dr. Wong. We saw her in Nov. and started the steriods on Jan. Tanner walked up and down stars for the first time by himself about two weeks after starting the steriods.
Give me a call and we can work out a time to get our boys together. (760) 822-3756 Talk soon, Traci
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