Information on starting Medical care for Giancarlo

Does anybody have any guidance for us on selecting the right medical group in California to work with DMD, we leave in OC and I'm a bit confused on where do we start when it comes to selecting the best doctors, I need help please.

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Comment by Cori on November 12, 2009 at 3:11am
We live is San Diego and have just begun this process as well...we are military, thus all of treys doctors are located at Balboa and we couldn't ask for a better team for him as they have set us up with therapist, peds neuro, ped developmental behaviorists, ortho, and cardiovascular doctors as well as a psycologist (sp?) team if we deem we need it, however we are in the process of waiting for a referral to the Duchenne Clinic at the childrens hospital in San Diego, so we can get in on any studies and have up-to-the minute data as we need it. I will let you know how it goes... Also we just started with CCS for the PT and OT which have been very VERY generous with us as Trey is not really showing any signs and symptoms of the disorder right now, but I expressed to them that I was "Willing to do WHATEVER it took", that the more help I could get now the better ~ and they gave us 2 OT and 2 PT appointments a week, I believe because they knew I wasn't going to 'cop out on them'. If you need their number I have it readily available as I also, since we just did the IEP have all that info as well, let me know if you need either and I'll keep you posted on the Duchennes Clinic here =) Lots of hugs to your family, Cori
Comment by Polly Sundeen on November 5, 2009 at 12:59am
Mariela - I'm very sorry to hear about your son's recent dx. We live in OC (Tustin) and suffered through local care for a couple of years after Cole's dx. He is 10 now and was dx 7 years ago. We have been taking Cole to see Dr. Wong and the rest of the neuromuscular team at Cincinnati Childrens since 2005. Dr Wong is Cole's primary DMD physician - and she coordinates his care with our pediatrician in Irvine. We receive very limited services from CCS which consist of evaluations 3x a year and they are very good about visiting his school to address any accessibility issues as well as participate in his IEP's. I did just hear that in 2010 the MDA will be having an OC family support group again - it was discontinued a few years ago. But if you would like to meet or speak with us - feel free to contact me at wanacrkr@yahoo.com I'd be glad to give you more information about what services I am familiar with in OC as well as more information about Dr. Wong and the team there if you are interested.
Take care!
Polly Sundeen
Comment by mariela pedroza on November 3, 2009 at 6:23pm
Yes I will greatly appreciate your time to talk, please advise when will it be convinient for you, thank you
Comment by Kim Maddux on November 3, 2009 at 5:29pm
Hi - I saw your message to me last night about care for your son. The best thing to do first is get a baseline overall checkup for a local clinic or Dr. Wong's team in Cincinnati.

You mentioned a clinic in Irvine for care for your son. Hopefully, someone in your area can give you advice on that facility or others in your area.

I live in Northern CA and we went to Stanford twice. The care there was horrible and the doctor's attitude about DMD was doom and gloom with no hope for us. We never went back. We go to Cincinnati and see Dr. Wong's team. It is amazing and we beleive the best. If you can do it, you won't be disappointed.

You may want to contact the CA Children's services and see what you can get. They may be able to help with PT and OT.

Alot of what can be done for our boys early on is preventive, such as; stretching (there are pamplets and DVD's to show you how), PT and OT, ace inhibitors (meds for heart), pool therapy. Also, there are others things you can research, supplements, vitamins, steroids (predisone vs.deflazacort) etc.

Also, there is information you can get from PPMD that you can provide his school, teachers etc. You may also talk to them about an IEP.

I know this is overwhelming. Take it one step at a time, you don't have to do it all at once. It took us a year before we started our son on his meds. If you want to talk to me live, let me know. We can set up a time to talk.

All the best.

Kim

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