Wyatt's Mommy, Melissa's Comments

Comment Wall (127 comments)

You need to be a member of PPMD Community to add comments!

Join PPMD Community

At 12:46pm on April 19, 2009, Char Burke said…
Dmd shows itself with delayed mile stones....boys roll over later, walk later, etc. If you ever wonder if it is typical or not, post on this web and you will get a variety of responses....it is an excellent source for you....Char
At 12:39pm on April 19, 2009, Char Burke said…
Melissa - If you son is 0-3 years, he may be too young to start him on steroids. But, I think Will started when he was about 3 yrs and 4 months. Here is my phone # 206-528-1661...I don't know Tonya's but here is what you can do to get to her page. Go to main web page of PPMD and upper right corner, type Tonya. Her little boy is a red head and it should take you to her page.
Here is what we do for Will.
1- goes to Dr. Wong
2 - stretches daily - they are on this site
3 - night boots - custom boots from Children's - should be covered by insurance or MDA - help the muscle from contracting.
4 - meds -
steroids - deflazacort - 21 mgs.
multi vitamin
CoQ10 - 200 mgs. daily (you should get dosage for your son)
Vitamin D3 - 2000 mgs
Calcium
Protandim - anti oxidant - can get online or GNC - General Nutrition Center - get the card for discounts.
some use green tea extract
some use Haelan 951 - product out of Woodinville...
some use glutemin, creatin,
We use L-Argenine - amino acid that helps cell metabolism for muscles.

I would personally work hard now on phonetics - reading - but won't get into that now.
Hang in there - I know those words sound hallow - together we are a tribe and we can make it.
Char
At 12:08pm on April 19, 2009, Char Burke said…
We go to Dr. Wong in Cincinnati and if you want me to tell you about what she does - let me know. She is one of the best in the country. Char
At 12:07pm on April 19, 2009, Char Burke said…
Hey Melissa - Did you know that there is a family in Covington, WA (Kent Valley) that has a three year old with DMD? She is very active in this site and proactive in her care. Her name is Tonya and I can email you her full name if it's ok with her. Char
At 10:41pm on April 17, 2009, Char Burke said…
Hi Melissa - Please join the Washington Families group. I live in Seattle. I am a working mom and we have a 6 year son with DMD. Is this a recent diagnosis? There is alot of things you can do to provide good care for your son. I would be glad to share with you what we do. Try and use this website to educate and share your feelings. There are so many helpful people and we all understand. Char Burke - Seattle, WA
At 6:39pm on April 16, 2009, Ian Anthony Griffiths said…
Im sorry to hear of your very recent diagnosis, I hope you and Wyatt are doing well. Hugsss
At 2:27pm on April 16, 2009, Ian Anthony Griffiths said…
Welcome to the ppmd forum! :) I'm Ian, 24 with DMD

Need help using this community site? Visit Ning's Help Page.

Members

Events

© 2019   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service