I'm sorry about the mix up with Dr. Apkon. I accidentally commented on that to you instead of another mom. Why no to the tube? I found fruit shakes to be good, if that is allowed. Favorite milk with banana & mixed berries or banana & orange, etc.
Yes, you did a great job explaining things. I hope things go well with your discussion with the pediatrician regarding the feeding tube and with Dr. Apkon @ Childrens.
Hey Heather,
The reason we are thinking about moving to Vandy is I dont think Justin is getting the care he should be. We dont ever do PT we have never even seen a cardiologist all they do when we go is kinda of look him over and say come back in 3 months.Seems to me all they are doing is tracking his condition. After I have been on here I see people are doing PT seeing cardiologist and getting alot better care. I know Vandy has a great Hospital and good doctor's I had a surgery performed there one time. I just feel like its a waste of time to go to the Memphis clinic.
Hey Heather,
We live in Huntingdon Tn our son will be 10 in Jan. I'am new to this forum also. we use the Memphis clinic but have been thinking about moving to Vandy. Just wanted to say hey we know what you guys are going thru.
Johnny
We use Vanderbilt. I only use the memphis MDA for camp. I had heard about the two Dr's in memphis and wasn't impressed what I had heard. Our peditirician also referred us to Vanderbilt. I am acutally quite pleased with the care we get there. You will find that on this board, you will hear a lot about Cincy Childrens Hospital and a Dr. Wong. EVERYONE pretty much agree's that she is the top Doc for DMD. Reason why I mention this is because we actaully have her cardiologist that used to be on her team at Vanderbilt.. AND the Neurologist at Vandy also did his residency there..so, I feel we are in good hands. I am no way implying that Memphis is not good, I just don't know a lot about it, only what I have heard, but no personal experience other than camp ( which I just love Norma and the gang). Talk to others on the TN group... Everyone is real helpful here!
Welcome friend! Check out the " groups" and find the Middle East Tn...actually it involves all of TN..but join that group and talk to those on there. Some use Vanderbilt other's use various clinics...
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Warmest regards, Liisa
I hope this is not too much to ask: I am curious as to how the disease and/or medications may have impacted the weight of your son.
Warmest regards, Liisa
The reason we are thinking about moving to Vandy is I dont think Justin is getting the care he should be. We dont ever do PT we have never even seen a cardiologist all they do when we go is kinda of look him over and say come back in 3 months.Seems to me all they are doing is tracking his condition. After I have been on here I see people are doing PT seeing cardiologist and getting alot better care. I know Vandy has a great Hospital and good doctor's I had a surgery performed there one time. I just feel like its a waste of time to go to the Memphis clinic.
We live in Huntingdon Tn our son will be 10 in Jan. I'am new to this forum also. we use the Memphis clinic but have been thinking about moving to Vandy. Just wanted to say hey we know what you guys are going thru.
Johnny