mom2amonkey Posted July 16, 2006 Report Share Posted July 16, 2006 Hi,I am new to the board and have really enjoyed reading the posts. I just bought a braclete for my son and he wears it everyday.My son who is now seven was diagnosed with POTS/Syncope when he was 6. I was told this is VERY uncommon. He had a tilt table test and the test had to be stopped within 8 minutes because of his symtoms. He went from being my active child to laying on the couch all day long. Don't get me wrong he does have a gew good days. He is on 7.5 mg of midodrine every four hours while he is awake. It doesn't seem to be helping all that well. He still has a very high heart rate. With activity it can go as high as 250bpm. His old cardiologist put him on Mestinon which made his symptoms much worse. We then saw a new cardiologist who told me BRaden was fine and to take him off al medicine. Of course, I didn't. We are now seeing a new cardiologist on Tuesday. I just don't want to make my son a guinea pig.Any suggestions???? Thoughts???Thanks for letting me share.ElizabethPS - he also has motility problem and is fed through a g-tube at night. He does eat some by mouth. He also has a lot of muscel pain in his legs and feet. He is going to have EMG's done in the next month or two. Quote Link to comment Share on other sites More sharing options...
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.