We are living in Vietnam. We've plan to go to USA for our son's health check. Can anybody advise us which hospital is best for Duchenne boy ? We have heard a lot of Dr.Wong in Cincinati and are impressed with what other parents have talked about her. Any other recommendation ? Much thanks for the advise.
We see Dr. Katherine Matthew's in the Neuromuscular Pediatric Speciality Clinic in the University of Iowa Children's Hospital in Iowa City, IA and have been very pleased. DMD is her speciality.
Dear Donna and Keith
Thank you. I heard of Cincinnati's branch in Shanghai. But cost in Shanghai is not cheap actually. The reason I want to go to USA is my relatives are living in Houston and LA. If we can find specialized medical center for Duchenne in Houston or LA, it will be so good for us (we also can save cost for accomodation and in-land travelling).
You will not find it in Houston (I'm from TX and use to to live there), but there is a new center at UCLA (I believe).
Thank you Laurie. I will check about UCLA.
Hi,I live in Plano,TX,its 5 hours drive from Houston.Here we go to see neurologist Dr.Susane Iannacone in Childrens hospital Dallas,She work with MDA (muscular dystrophy association ).If you go to visit her ,you will meet the team of physical therapist,nutritionist.For cardiologist and pulmonologist you can go back to vietnam and do recommended tests there.This is all when you want to drive somewhere close,otherwise Cincinnati hospital is another choice.Also whoever you see,ask for Defalazacort prescription .Good Luck
Thanks to Laurie's advise, I contacted with UCLA and since Sep. 2013, my son has been in Translarna trial - now is phase 3 extension. We travel to UCLA per 12 weeks (last year was 8 weeks), quite tough but we appreciate our chance.
Thanks, Jiasusa. Best wishes to you and your family.
Yes, I heard Cincinnati is so good. Luckily you can go there.