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!!!
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.
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.
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.
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.
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...
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.
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.