Hi Johnny, We live in Knoxville, but are from Lexington, so we are in the area a lot. We've just received our diagnosis a few weeks ago, so we are still kind of "in shock". We're going to Vanderbilt, and they have really been great there so far. We are going to be down the week of Christmas, and if your family is in the area then, we'd be glad to share any information about our doctors. Or, feel free to email: firstname.lastname@example.org. Hope yall are having a great week!
I live in Jackon Tn and have a nephew who is 13 years old and has DMD. Brandon lives in Madison county, goes to Trininty and is wheelchair dependent. Brandon goes to Vandy, he went to Memphis for a while but they changed to Vandy and they love it there. My 2 younger sons Andrew 21yrs and Parker 23 yrs are counselors at the MDA summer camp in Middle Tn. and love it.
Hey Johnny,Hope all is good with you and yours!...
I just wanted to tell you about our Vandy trip yesterday for a six month check up. Basically, he had a PT come in and eval him, discuss with us how things are going with stretching, etc, and to see if he needed any new braces, or night splints. We were good to go as we just got a new set a few weeks ago, but we access our regular dr for this. Anyway, Dr. Burnette saw him, did his little muscle test ( a hand held device used to measure strength) and wrote another perscription for steriods. He showed us a "wedge" used to help him stretch so that we can maybe make one. Next time we go back it's with Cardio as well. AND..here is the big one, he is going to try and attend the PPMD conference next summer as he is interested in keeping up on the latest in research etc. So, all in all, we had a good experience. I would strongly recommend you check it out, I feel really good about the care we get there. If you want to see pics, check out my blog and see the entry Vanderbilt Update.. Bog address: powellmishaps.blogspot.com anyway, I would be glad to answere any questions.
Now Liam sees a PT and has since he was 5. But that is because I fought for it and we do it in Dyersburg. I have my Peditrician write the order each year. Liam sees a cardio too, but that was also referred by our local dr. I agree that Memphis MDA is about tracking and not treatment. Liam has had some unique difficulties. But the doctors at MDA do not seem concerned.
I will start with camp. I know about shyness, my son is very shy as well and takes him awhile to warm up to people...but with that said, his first year, we drove him to camp ( land between the lakes) and let him stay. At first, I was afraid we would get a call, but he stuck it out and had a blast! The next year he said he wasn't going, but when it came time, he went and had fun! This past year he was excited about going...they spoil those kids rotten. They have toys, and all kinds of goodies when they return...it's AMAZING what they do for them!!
Ok, since you have been followed by memphis MDA, you probably already had the initial bloodwork done to show that he has DMD etc...so, this would typically be something that Vanderbilt would start with. Also, if your son was taking steroids, he would probably have a bone density scan, since he is not...not likely you would need this. Also, they would recommend your son see a cardiologist for baseline workup ...since DMD affects the heart as well. At every visit, the DR uses this tool that measure's his strength. Just a hand held deal that he pulls, pushes against that measures how much strength he has etc...He has him walk, run up and down the hallway, every other visit is cardio and bone density ( 1 x a year..as these appointments are 6 months out) and of course talks to us about needing PT or AFO's etc.
AFO's...well, my son has walked high on his toes since he was 3. We found out of his diagnosis when he turned 8, although we had therapies..he still was high on those toes. So, this is a plastic boot like thing that keeps his heal cords stretched so that he can maintain his walking. Anyway, I hope all this info doesn't alarm you. What one boy with DMD is going through does not mean that every boy goes through the same things. Surely memphis clinic has been watchfull of these things...anyway please don't hesitate to email. I would be glad to answere any questions.
No, I am not married to this other Powell...My husband is a RN though, funny how that is.
I DEFINATELY feel it is worth your time to take him to Vanderbilt! I can't believe that you haven't had PT...wow! We get PT through the school 1 time a week for 30 min. and additional time at the Kiwanis Center, Hydro therapy ( in the pool) for 30 min 1 time a week and we recently stopped another session of PT because he is doing fine.
Our Peditrician has ordered this and of course the Vanderbilt DR would have ordered it to, but we already see his peditirican for that. The care there is very different than what I have been told about Memphis. Has your son seen a cardiologist? any other services? Taking steroids? Wearing AFO's? You will not be dissapointed taking him to Vanderbilt, I am sure of it!
Anyway, I bet the boys know eachother through camp. Did your son go to camp this past year? Christian has attended the last 3 years, has a blast everytime!
OOOHH, sorry, I see you are from Huntingdon..you aren't that far from us! Maybe sometime we could get the boys together...Christian is 10 going on 11 this Dec. Anyway, nice to have you on this board, there is LOTS of good info here!
We live in Jackson TN and take our son to Vanderbilt. I don't want to say anything negative towards the Memphis MDA as I have never been to that clinic. We do however use the mephis chapter for camp as we love Norma and the gang!
As far as Vanderbilt, I feel we are in excellent hands. Dr. Burnett is the neurologist that we see, he is from Johns Hopkins and also did some work at Cincy ( which is where the infamous Dr. Wong is). If you don't know about Dr. Wong, then you are bound to hear of her and how wonderful she and her clinic are at Cincy Childrens. Anyway, so we are fortunate to have Dr. Burnett who worked with her and Dr. Markham who was her cardiologist. Both dr's are working towards getting the clinic set up like that at Cincy Childrens. They have been good to us, even before Dr. Burnett came, so I have nothing but good things to say about them. How far are you from Jackson and did your son go to summer camp this past summer with the Memphis MDA?? I may have met you...