Thanks Toya. I do feel overwhelmed! How old is your son?

I know how you feel. I was so nervous. After we ordered it, it took us a while to actually start it. Colin has always been at the top of the charts (he was almost 9 lbs. at birth, 2 weeks early), so I was very concerned about the weight gain. We have changed our diet- he already ate pretty healthy, but we are basically just limiting juice and eliminating processed foods as much as possible, watching his sodium. He just had an appointment last week, and his BMI had actually decreased since last time. He is able to do more, so I think he's burning more calories. So nothing yet, and it has been about 31/2 months. He is pretty mild-mannered, and we did notice a slight change in his emotions. A little more agressive and cries a bit more. But that is actually going back to normal now. He is hungrier now, so we just offer fruits and veggies when he says he's hungry. Good luck. I think you will be happy you made the decision to start it.
Let's keep in touch- our sons are the same age, and we have daughters the same age, too. I'm a teacher, too! Let me know how it goes.

Tonya,
I have a four-year old son with DMD as well. Your kids are beautiful!
Colin was diagnosed this past summer. We started him on Vitamin D, CoQ10, and Omega-3 right away. I think the Vitamin D or something started helping right away. That along with daily stretching, and the night splints to keep his heel chords stretched. Is Gus doing those? They really helped Colin. Looking at your pics, your little Gus reminds me a lot of Colin.
We did finally start Colin on deflazacort about 3 months ago. The difference in his strength, stamina, and energy is huge. I know it is scary, but Colin can do so much more, and he is so much more confident. We have family in Charlestown, NH, so we do come east from Washington State every few years. Hang in there. We are pretty new to all this, too. It's hard, but it helps to know you're not alone.
Jeni

Tonya, I know I can't believe it either. Sometimes I "forget". It just doesn't seem possible that I had 3 healthy boys before Wyatt. (Which I thank God for everyday) Initially I was sure that it was a random event and I couldn't be a carrier. Unfortunately, it turns out that not only I am a carrier, but so is my Mom and 15 year old daughter.

Wyatt takes 3000IU of Vitamin D, 50mg of CoQ10, and 15ml daily of an antioxident drink, Also he takes like every other day a liquid baby laxative (he has horrible constipation).

We are slowly starting him on other stuff too, he's just so small for some of the stuff (protandium, Haelen 951, etc.) So he will start those things sometime this year.

I hope we can talk soon, take care.

Melissa

Hi Tonya, Your kids are just gorgous. My nanme is Melissa and my son Wyatt was diagnosed on Jan 9, 2009. He's 22 months old and our 5th child. We had never even heard of DMD prior to Wyatt's diagnosis. I hope you find comfort and support here, I did. My cyber friends got me through alot of dark times. God Bless your family.

I'd be glad to let you know everything that we do. I'm so sorry to hear about your son. We are all here for support. This ist he greatest place to be for help and support. I've got a very, very busy 3 weeks ahead, but let me know anytime. It may be after that until I can respond. Kelvin has improved a lot over the last few years, through everything we do, steroids, supplements, braces, etc. He is doing great for 7 years old. Thanks, Michelle

By the way, beautiful pictures!

Nonsense Gene, there is a new treatment that holds promise. There is alot of good things on the horizon. I do have faith in that.

Oh My God. I hope you are feeling better, physically anyway. That's horrible. Keelan's diagnosis came right on the heels of my Mothes losing her battle with lung cancer. Someone said that it's a 'compliment from God' when everything happens at once like that b/c He thinks you are strong enough to handle it. At some point last year I figure God thought I was awesome! :)

I am not a carrier. Keelan skips exon 42-46. If Gus has what's called the Stop Codon or