Hi. Thank you for adding us to your list. This is my first blog so I hope I'm doing this right. Our son Will is 5 and he sees Dr. Sladky as well. My husband and I have been thinking about taking him to the MDA Clinic as well just to get a different perspective. Have ya'll ever been there? We feel so lost and disconnected in all of this. Thank you for reaching out.
We are waiting for Brandons point mutation test to come back still, so we have not been to any other doc, but Dr Sladky. I really haven't heard anything about the MDA clinic, good or bad. We also feel lost in this, as it seems to be a lot of adjustment, but a lot of waiting at the same time.
Our son, Nixon, saw Dr. Janus and Dr. Goldstein at the MDA clinic at Scottish Rite for the from 2001 - 2006. We were never very happy with the care we recieved. We would see them every 6 to 12 months and that'd be it until the next time. Usually they mail us an appointment time for our next visit but we've not heard from them since 2006. I have called many, many times and left messages at both the clinic and at Dr. Janus/Goldstein's private office and NEVER recieved a return call. The last visit at MDA Atlanta, they recommended that Nixon go into a power chair (a big deal to me) and again, no follow up. Even the equipment vendors they use are terribly hard to get in touch with and do not follow up. The doctors at MDA clinic never, ever volunteered any information to us and I had to find out everything on my own. Thankfully, I found PPMD and ran on the RUN FOR OUR SONS team at WDW in January and met many families who see Dr. Wong in Cincinnati. We've seen her and I can tell you that the care we recieved at her clinic has been out of this world. She or her staff is in constant contact with us. The only draw back is that if you have a HMO insurance or Medicaid, you'll have a hard time going out of state. Sorry for the long reply but if you are happy with your neurologist, don't switch to MDA.
before we got hooked up with dr. wong, we took jacob to dr. edward goldstein at scottish rite. he has a mda clinic there. he is great, he is the one that got us in with dr. wong because jacob has a stop codon and is part of the ptc124 trials. he is also the doc at the mda camp every year. a great guy, we highly recommend him. but to be honest, now that we have been to dr. wong, we will continue to make the trek to cincinnati as many times as need be. it is a great place unlike any other we have been to.
hope that didn't confuse youl