PPMD Community

Karen Barnett Female Howell, Michigan United States: Favorite

0 members favorited this; Share on Facebook

Share Tweet

Featured Blog
Discussions (321)
Events
Groups (11)
Photos (87)
Photo Albums

Karen Barnett's Favorites

Karen Barnett's Friends

View All

Karen Barnett's Groups

Medication/Supplement Jo…

59 members
0 Favorites
Duchenne Smiles

115 members
78 Comments 0 Favorites

Tactile Sensitivities

41 members
47 Comments 0 Favorites
Deletion of exon 51

19 members
24 Comments 1 Favorite

Cincinnati Children's Ho…

193 members
420 Comments 1 Favorite

View All

Karen Barnett's Discussions

At What Age Did Your Child Stop Walking?

Started this discussion. Last reply by Karen Barnett Jul 8, 2015. 9 Replies 0 Favorites

Prednisone & Bruising

Started this discussion. Last reply by Karen Barnett Dec 9, 2013. 5 Replies 0 Favorites

Medical Insurance Got Cancelled!

Started this discussion. Last reply by Keith Van Houten Sep 27, 2010. 29 Replies 0 Favorites

View All

Welcome to my families page!

Latest Activity

Karen Barnett replied to Karen Barnett's discussion At What Age Did Your Child Stop Walking?

Jul 8, 2015

Mandy replied to Karen Barnett's discussion At What Age Did Your Child Stop Walking?

"Hi Karen, My son Alex walked until he was 16, at which time he fell and broke his leg and never walked again. Regards, Mandy"

Jul 2, 2015

danielle replied to Karen Barnett's discussion At What Age Did Your Child Stop Walking?

"My son is 10 and he stopped completely walking at 9. He's been confined to a wheelchair since last November and is already having all other problems to. Count ur lucky stars ur son is still mobile."

Jun 29, 2015

Karen Barnett replied to Karen Barnett's discussion At What Age Did Your Child Stop Walking?

Jun 29, 2015

Profile Information

About me:: Mother of 4 children. Son Daniel 2/15/01 has duchenne with a deletion of exon 51.

Name(s) of child(ren)/individual(s) with Duchenne:: Daniel Barnett

Age(s) of child(ren)/individual(s) with Duchenne:: 13-18

City:: Howell

State:: Mi

Karen Barnett's Photos

Comment Wall (84 comments)

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

Join PPMD Community

At 5:19am on December 8, 2010, Julie Garcia said…: Hey karen!

At 1:28am on August 31, 2010, Char Burke said…: Hi Karen - I was just wondering how Daniel is doing? Do you have him on a low dose of deflazacort or completely off of it? How about his bi pap - any luck in getting him to use it? What about the walking - how's he doing? Did you guys finish your remodel? Will broke his wrist when we were camping so he has a cast now...it's his dominate hand so am worried about that. Let me know how you are doing. Char

At 12:35pm on November 27, 2009, Shellie Phillips said…: Hi Karen,

Thanks for the add! I look forward to checking out the Michigan group. We just moved back a month ago and looking forward to connecting with others in the area.

At 2:39am on November 12, 2009, Darcy Tumminello said…: Karen,
I noticed your previous post about ODD. We may be dealing with that.
What has helped your family deal with this. Are there any supplements that will help ?

Thanks Darcy

At 9:47pm on November 5, 2009, Jenise Furman said…: Sorry it took me a few days to get back with you. I have just submerged myself into research. How long have you known your son has DMD? We just found out about 3 to 4 weeks ago. I have tried for a few years to tell the doc that my child did not move like he should be...chalked up to traumatic childhood (he came to me as a foster child in 2006) then it became just a confidence issue. I am glad I did not stop trying to figure out what was going on with him. I wish with all my heart it was not DMD. I thought they would tell me they could fix him with special shoes or something like that. Now I am trying to make sense of all this.

At 5:56am on July 28, 2009, jean torrance said…: Hi Karen,
Yes we live in the big city of Pinckney. Nick has a cough assist and it is wonderful - as far as useful equipment goes. He was scared of it at first but now asks for it when these newly formed allergies flare up. Nick had scoli surgery last year and we are doing those sleep studies at U of M as well. We are doing o.k. - I did go to the PPMD conference in June and was overwhelmed by all the info...in a good way!

At 1:08am on June 17, 2009, Julie Garcia said…: Hey you!!! I hope you are doing well...talk soon

At 10:51pm on June 15, 2009, Janine said…: Hey I think I accidently deleted your reply to me. I was getting rid of some of the comments when I got to the second one which I thought was the first I realized I deleted something without reading it. Did you by chance respond to me about when I asked how your son's IEP went? If you did I'm very sorry but I didn't read it. So anyway how did it go? Feel free to totally ignore me if you would like

At 11:40am on June 14, 2009, Janine said…: How did your IEP meeting go with the advocate present?

Janine

At 7:43am on May 18, 2009, Janine said…: No problem Karen. I can understand the school issue being a sensitive issue for you. It is not something we have had any problems with and I really can't even imagine having to deal with all that on top of the dmd. All of our dealing with the school have been how to make it easier for him to get around and thankfully he is in eight grade and we have never had any problems. Of course as a mom I worry about him going to high school next year.

I hope your next IEP meeting with the advocate coming with you goes well. Having a person helping you that is not emotionally involved can only be a plus.