Laurie Barton's Comments

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At 10:46pm on December 3, 2010, Kim Innabi said…
Hi Laurie, I'm sorry I can't be of much help with your question regarding doctors in California. I live in So. Cali and have an HMO (Kaiser Permanante). I wouldn't recommend Kaiser - for me it's been trouble because I'm not with a group and there is no DME coverage. My son is 14 and I take him once a year out of network to Cincinnati, but we don't see all the doc's there and I coordinate all the testing through my ins. I remember exchanging a few messages with you a couple years ago. Glad your sons are doing good and welcome back to California when you come. Good luck!!!
At 9:48pm on December 3, 2010, Gregory said…
You mentioned in a previous email that you and your family are moving back to California, asking about a doctor at MDA clinic. I usually go to the MDA clinic in SF, Dr. Miller is very good.
At 8:44pm on April 1, 2009, Janine said…
Laurie,

You mentioned a daughter-in-law on your page. If you don't mind me asking is one of your sons with dmd married? Is that a pic of your grandaughter your son is holding? I was curious.

Thanks,
Janine
At 10:50pm on March 12, 2009, Gregory said…
Hi Laurie,
I was reading your comment about your son's having hip/lower back pain. I also have the same problems. Have you ever tried an alternating air pressure mattress, I find that I can sleep all night and feel more rested the next morning. Most of my pain in caused from my wheelchair, cant get much relief from the pain. I have seen several doctors, however not much luck with that, instead they want to just give me pain drugs, which I currently use a pain patch, seems to help me. I am also trying to get an alternating air pressure cushion for my wheelchair.
Do you have any other suggestions that I might try? I am 38years old.

Thanks,
Greg
At 9:11pm on February 26, 2009, Chris's Mom..Chris Wade McClusky said…
Laurie,
Thanks for the advice. I'll try to get Christopher more involved with projects outside the house. It's going to be hard to do with winter weather but maybe when the air gets warmer.

Dawn
At 6:06pm on February 26, 2009, CLeAnn said…
Hi Laurie,
Well to the community. I am a genetic counseling student in the Philly area. My hope is that by meeting families affected by MD I will be more aware of potential obstacles and areas where families could be helped further. I would love to hear any suggestions or stories you would like to share.
At 12:51am on February 26, 2009, Chris's Mom..Chris Wade McClusky said…
Christopher doesn't want to work or go to school. He just wants to play all day. He doesn't like the winter because it is too cold. He loves summertime and swimming. I wish I had a pool for him.
At 4:47pm on February 25, 2009, Chris's Mom..Chris Wade McClusky said…
Your sons look pretty good for their age. What's their secret?
At 12:13pm on February 23, 2009, Missy Shutts said…
Laurie, are you referring to our annual conference in Atlanta or the Run for Our Son's team at the ING Georgia Marathon? I will be happy to send you any/all information!
At 8:26pm on February 16, 2009, Gregory said…
Thanks for joining my group! Yes,travel by air is very difficult. Sorry I live in Northern California, so meeting you is not possible. Here is my email if your son would like to correspond with me.
gslanders@gmail.com

Greg
At 6:41pm on February 16, 2009, Gregory said…
Please join our San Francisco Bay Area Families group.

Greg
At 11:53am on February 6, 2009, Julie Garcia said…
Hi Laurie,

I am from Sacramento and would love to spend some more time talking. It sounds like you have a lot of good information to share. I will be leaving for DC tomorrow to join PPMD and other families to try to raise awarenss and funds for NIH and CDC. Perhaps after I returen we can talk more.

Take care,

Julie
At 12:51pm on February 2, 2009, Mindy said…
Hi Laurie,
It was great to talk with you, too. You gave me some fantastic perspective. One thing I kept thinking about was steroids. I'm sure you've seen boys that have been on steroids for years - they tend to look somewhat strange. I keep thinking about your son and his relationship, and wondering what's best for Aidan. I could keep him on steroids for years and have him look like an 8 year old at 18, or I could take him off, have him lose his abilities earlier, but then possibly be more open to having a relationship like the one your son has? It's such a tough choice...

Take are,
Mindy
At 12:26pm on February 2, 2009, Eileen DeLong said…
Hi Laurie,
So glad to hear from you. It is a big job coordinating the care for my guys. But is well worth it. We drive out once a year to see Dr.Wong in OH. We went to Boston Children's at first and we were alternating between but stopped going to Boston Children's because they really were not in step with Dr. Wong. She send all the info over to our family doctor to keep everyone in the loop. We are going to a new clinic at Mass General this month. They have modeled their center on the Cincinnati clinic, so we will see how that goes. We get their splints made locally so that works out good. So far everythings is working out the best it can. They have 2 different Dads so that make it even more complicated. So far they are doing really well and have not needed any surgical intervention. They will be 10 and 13 soon and are walking really well. They are on deflazacort which has helped them alot. I had an Uncle and 2 first cousin who all lived into their 40s with really no treatment, so that gives me a lot of hope that what we are doing will help them have a better quality of life.
Eileen
At 12:51pm on February 1, 2009, Sabrina said…
thank you ya i have been on here for a wile i some how deleted my old page so had to sing up again
At 10:15am on January 28, 2009, Vonda Fox said…
We live in the city of Reading. Our 12 yr. old son, Ryan, is diagnosed with BMD. He just started the ptc124 drug trial at CHOP. We are hoping he is is getting the actual drug and not the placebo.
At 10:24am on January 27, 2009, Jacobs Mommom said…
Hi Laurie:

I'm sorry I didn't write back sooner. I didn't realize that we had to check our messages. I thought it would give me an email letting me know I had one. Now I have 4 all of a sudden!

Thanks for writing back to me and I will check out your website this weekend and then I'm sure I will have plenty of more questions.

Donna ~ Jacobs MomMom
At 2:00pm on January 19, 2009, Jacobs Mommom said…
Hi Laurie:

I have grandson, Jacob 8 1/2 with Duchenne and I live in Doylestown, Pa. My daughter and her family live in Lansdale, Pa. I don't think Auburn is too far away from us if I'm thinking of the right town.

They are getting ready to start to remodel their home to get it ready to be wheelchair accessible and it would be great if we could talk to you and your sons sometime about how to go about it.

Jacaobs MomMom
Donna

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