thejohnsongang Posted March 7, 2007 Report Share Posted March 7, 2007 Took our daughter to John Hopkins Hospital yesterday to see CFS specialist ( Peter Rowe)for her symptoms. Come to find out my gut/mother feelings were correct. She does have POTS as well as CFS and her food allergies (EG) are acting up again. I was devestated by the news. He also dx her with ADHD..needless to say her medication list is pretty long. We spent 4 hours with him going over everything and doing testing. He is a wonderful doctor. Anna had seen him before when she was 6 for her food allergies. He was a regular pediatrician then. His son also has POTS/CFS as well as ADHD so he understands it from a parents point of view as well as a physician. This disease is bad enough for me to deal with and I have endless days of depression/anger for having it and for it robbing me of my ability to do things with my kids like I want/need to. Now I have to deal with the fact that I have passed it on to my daughter. Does anyone else feel this way? Have any of you unknowly or knowly passed it on to your kids? How do you deal with it and not feel guilty?Her dip in BP and spike in HR ( a 48 bpm increase) was larger than mine, but due to her athletic abilities she tolerates it better than I do. He had her do a different version of the TTT where he had her lean backwards aginst the wall for 20 minutes and checked her BP and HR every 3 minutes and checked her symptoms....at 17 minutes she got so dizzy she hit the floor...but did not actually pass out. He stopped the test then. It was very hard to me to listen and learn about her...but at least I am educated on the disease and know what we are dealing with how to help her.I am just so @#%^& mad and angry about this disorder...ERRRRRGGGGGGGHHHHHHH!!!!!!!! I just want to scream sometimes. Just needing to vent to people who understand. Not many in my world do except my husband and mother...and they are a god send to me. Anyone who can share their wisdom with me...please do so. Quote Link to comment Share on other sites More sharing options...
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