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Looking For Alternatives....

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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Comment by jenn on November 29, 2009 at 4:07pm: our first visit was 3 full days of appointments, but we have 2 sons, my advice is that you ask them to schedule only half a day, even if it takes two or more days, or ask them to give you time between appointments, the hospital is big, and it can take a while to get from one end to the other. it gets tiring to have appointments from 7 am until 4 pm, plus fitting in lab tests and blood work which they dont always add in time for but will probably be added. i think in april they are spreading it out 4 days, only morning appointments. also they will give you passes to the local museum and discounts to other spots. we love the museum.

Comment by Phyllis on November 29, 2009 at 2:23pm: Thank you jenn and amber for your help. Jenn I have given my info on Duchennes Connect my son has 48-50 deletion. I am still trying to educate myself on exactly what deletion mean and what the differences in numbers are. I will definately look into the scooter and have heard alot more positve about defluzacort so i will check with our neurologist. I absolutely love our neurologist he actually encourages us to visit dr. wong. Do you all know when you make an appt. with dr wong is it a one day visit can you give me an idea about how the first visit works I recently found a job and i need to see how to work it out? Any help would be great we are comming from Florida...Thanks guys you have provided some good info I can share with mu husband, o appreciate you both--phyllis

Comment by jenn on November 28, 2009 at 9:40pm: the first thing you can do is easy, to register for duchenne clinical trials go to duchenne connect website, do you know what deletion your son has?if you dont, your doctor does from the DNA tests determining duchenne. my boys have a deletion of exon 52, and we hope to have them in the exon skipping trials that are hopefully going to begin in columbus ohio in march. i really recomend using deflazacort, both my sons use it, and it really helped them to stabilize physically, my 10 year old does have a round face, but with proper diet (low salt and low calories) they dont tend to gain too much. we also went to lots of doctors before we found dr wongs team, it is important you feel good about your doctor, we also have medicaid and it covers everything there. i also suggest you get your son a scooter, pride mobility makes a really good small one called a gogo, our boy uses it to go everywhere, so he doesnt get tired or fall. research is coming along, slowely,but it is coming, we have hope. take care, and feel free to ask anything

Comment by amber Burns on November 28, 2009 at 6:39pm: hi Phyllis,
I can not answer all your questions but I can answer some. Dr Wong does except Medicaid, We are going tomorrow and my children are on Medicaid. I have mixed views on Steroids. I have one son on deflazacort and it really helps him. But my other son gained 15 pounds and got the moon face and the mood swings. He got all the side effects with no benifit. You may try it and see. Everyone is different even with Duchenne's. I hope this helps some.