mom2amonkey

Thanks for asking....my POTS is doing so-so. I have my good days and my bad days. If it weren't for the extreme fatigue I would probably feel much better

Interesting topic. I got pregnant when I was 18. I was diagnosed with POTS when I was 13. I felt pretty good during my pregnancy and continued on my propanalol the whole 9 months. Since he was born, life has been one big roller coaster ride. He has had medical problems since the day he was born. At 13 months he had a feeding tube inserted because his stomach didn't work properly. As a toddler and preschooler he always complained his heart was "beeping" fast. I took him to cardiologist after cardiologist and I finally found one to listen to me. Even though the others had holtered him and he had documented heart rates of 200+ even while sleeping I was told he was fine. I decided to take him to Children's Hospital and he had a tilt test done and he passed out within minutes. He was then diagnosed with POTS and syncope. Braden is now 8 and struggles everyday just to even get out of bed. We have tried numerous medications with some relief but not enough. I feel guilty everyday knowing that I passed this on to my son. I just don't think I could do it again. Those of you with children, do your children show any symptoms? Elizabeth

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. Elizabeth PS - 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.

I am sorry you are not feeling well. My seven year old son takes 7.5 mg of midodrine every four hours. The midodrine seems to work well for him for a couple months and then he is back to laying on the couch. We tried Mestinon with an even worse change in symptoms. I hope your Dr is able to find the right combination of meds for you. Elizabeth