We are seeing Dr. Wong in January. The only other md related doctor that he has is Dr. Phan who is the neurologist that diagnosed him here at Children's in B'ham. We have not gone to the MDA clinic here yet. I guess we will let the Cincinatti trip be his first MD checkup and then we will followup later with the MDA clinic in B'ham.
What about ya'll?
My name is Emily Gregory and we live in Birmingham. Just saw that you were from Jackson. My husband and I went to Ole Miss and have lots of friends in Jackson. Our son Beau is 3 1/2 and was diagnosed almost a year ago. He has deletion number 54. I don't know much about stop codon....I am still learning.
Thanks for checking in. I have been constantly calling the Dr. to see if our results came in and I was told that it takes 12 weeks and will not be in until around Sept 1st!! I spoke with another parent that sees the same MDA dr. and went to the same hospital for blood work and her results came in two weeks!! I asked the nurse about this and she said that our tests may have gone to different labs due to different insurances...I am really trying to be patient...if I do not get results by the beginnig of Sept. I may not be so nice about it. LOL! I just think having our mutation will at least give me some direction...I can know what we are dealing with! How is everything on your end?? Keep in touch!
We are good. Seph is getting nightly HgH shots and it is getting harder each night! That is not good!! I hope that goes away soon! I am glad you are surviving. The first weeks/months..ok, year, are the hardest! Let us know how we can help.
feel free to ask me anything although I am pretty new to this all too...Jan. '08 was our diagnonis...however, you learn really quickly on this site. These parents are a tremendous wealth of info and I now know more about Duchenne than I ever thought I could in 6 months. Not that I am ever glad about a diagnonis, but I see your son has a premature stop code...that is wonderfully hopeful...the lab/doctor conducted the wrong DNA sequencing, so we are still waiting for our results, but I am praying that Riley has a stop code or needs skipping of Exon 51 since those two things are the 'what's happening now'!! The conference was WONDERFUL...it may be in Atlanta next year...you defintaley need to come!!
I read your post in La and MS families. Those of us here on PPMD in La are all going to Cincy to see Dr. Wong for care. Apparently care in La and Ms are equally disappointing. You should look for Lori Ware on this site, she is from West Monroe, La which may be closer to you? (I am approximatley 3 hours from the state line) She is a wealth of information about our lack of care in the south and what to do next. I am sorry that you had to join our family, but I am glad to 'meet' you! Please feel free to comment me anytime!