Hello everyone hope all is well...I am looking for any information from anyone who can give some. My son just turned 8 and was dx with Duchenes last November...For the past six months I have been trying to get in with Dr. Wong unfortunately 4 weeks ago I was laid off and now have filed for medicaid because our cobra policy is 1500 a month and i am the only one workiing in our 6 person household. Does anyone know from an insurance or financial perspective how Dr. Wong works? Does she take medicaid? Also has anyone researched other hospital that do Duchenes treatments? One last thing how do you get your child into clinical trials, i mean how do you register? I feel like me doing nothing is like ignoring his disease and I dont want to ever look back and play the what if game? I know i am asking alot of questions but i truthfully dont know. We went to our MDA clinic here and the dr. was a nightmare and made my son do things he couldnt and when he fell his dad was drawn to help him but was scolded by the dr saying "he can do it"..well yes he could and he did it took a little while but he got himself up by using the wall...our fear there was what if that was a street or he fell off the sidewalk into a street? He does not do anything unattended the mere thought of that scared us. Our wonderfuul neurologist told us on our last visit that we may want to consider steroids. Does any one have information I dont because all that I see when I research it is not promising or a treatment i would jump aT? ANY HELP WOULD BE APPRECIATED....
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