Hi Wendy Where in san diego do you live? We are in Rango san diego just past El Cajon. do you go to mda clinic? and how is your boy doing? I have had a diffcult week Caleb is now in afos and not wanting friends to know. school friends cause it makes him different.If I could have had someone to call it would been so helpful. hoping we can become friends only someone going on this journey understands. I talk to God everyday but sometimes it nice to talk to another Mom..I will give you my #if you want please let me know. Penny
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.
I can relate about not bringing yourself to finding out...it is heart wrenching...I got to the point where I was like, okay, I need to know...I try not to let my fear get in the way of the reality at this point. When I was diagnosed as a carrier, after my oldest was diagnosed, we knew what that meant for the baby. When we got his results, it was the second worst day of my life...his CK were higher than his brother. Not sure how we made it through ...god, if it weren’t for my husband, I am not sure we could have made it through the "dark days".
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!!
Hi Wendy, i was just looking at your page and i noticed someone asking about Ethan's CK....I have two boys as well, both with DMD...I assume your a carrier? Did you get the results? (sorry, you can also tell me to mind my own business:))
Just want to make sure you know your not alone...I remember waiting for my youngests results...It was gut wrenching...
Yes, Dr. Wong recommended the CoQ10 and actually increased it after the last visit in July, she also increased the vit D; the only thing i did on my own was the fish oil; i have a friend who did a lot of research on the benefits of fish oil and had amazing results with it.
Hi, Wendy thanks for your response, I did find there is some info under discussions on supplements on here and also another place that has a chart on what some other have used and their side effects from them. I just realized our boy's do have the same deletions. I'm still researching on what brand and type vitamin D3 to get and of the Cq10, I also have seen some are using some thing called Noni juice. I will post again once I find a place to buy the stuff. I'm checking prices online and local stores.
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
-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)
-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.
Thank you! The best to your sweet angels too. Enjoy the weekend. I know it's hard, but try not to think about Ethan;s CK all weekend. I love Jake's hair. A Bella what a beautiful little princess. I will be thinking about you guys on Monday. Best Wishes.
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