kclynn

Julie, thanks for the encouragement. She didn't even give us any paperwok on his tests and i had to ask to see them on her screen. His starting hr I think was 98 and the blood visibly pooled in his feet.

We met with the Mayo Dr. yesterday. The first thing right off she only would let one parent come back so I went. Thought that was really odd. Nurse had said my husband could come back in 10 minutes but became apparrent that she didn't intend for that to happen. After the 3rd time I said I wanted him back there she kind of huffed and rolled her eyes and called him back there. His test was borderline, but did go up to 126. She didn't think she could give him the diagnosis of POTS but then said he needed treated as POTS and ordered an exercise test for a POTSY type kid. She ordered Mestinon and salt and exercise. She kept repeating that she just didn't treat kids, though. My son was clearly having a hard time and she was hopeless. I asked for a "diagnosis" to help us with such things as school. She said that was the neurologists problem. He has major symptoms and feels almost as bad as when we have been talking to the other Dr. but at least this time the Dr. acknowledges that he is having autonomic problems. It was just strange. I will be pursuing an appt. with Dr. Grubb next, follow what she said and see what happens.

Wow, Thanks for the replies and it is good to hear others have had similar experiences. My son is pretty independent so that is good. I think he is just glad and relieved to be here with Dr. listening. We have the Dr. appt. tomorrow to find out all the results. We were able to get it rescheduled. I guess they told him he sweat more than anyone they have ever seen. When I saw him he was dripping purple head to toe, not a spec of orange anywhere. Christy, how long has your son been out of school. Mine started missing the middle of Oct and by the first week of November just couldn't get there at all. We started the home bound the end of November. He has a mountain of work to do and has only been able to do a couple assignments every days. They Homebound teacher is really good, very, very sympathetic but makes him keep at the work for the hour she is there. She doesn't care if he is laying down or what ever he needs, frequent breaks, etc... She can see he can't do more than this and reports this back to the school so they know he isn't just not making the effort. This is one reason I really want to get the diagnosis so we can get more help from the school and maybe less work! Does he really need to color maps? Or complete the entire analysis of Romeo and Juliet? Well, that is the next hurdle.

My son (15) is just being diagnosed. I was just curious about what other people's resting heart rates are (before meds if you know)? I noticed his is around 100 when he just wakes up in bed or is just sitting for a while. Just last summer early fall it was in the low 80's and 60's when he was just waking up.

My son (15) has had the tilt table test and some others, valsalva, autonomic reflex test at Mayo on Friday. Don't have any results and they made me leave for the tilt. When I asked him about the tilt test he said the bp stayed fairly steady (though I can't be sure how accurate he is on that) but that his heart rate was in the 140's and the beeper kept going off (tackycardia)? Also, his feet got so painful and turned purple and they called a Dr. in to look at them. Monday is a sweat test and then we are not scheduled to talk to a Dr. till January 6th about the results! We plan to just go over there and sit and be a "checker" because I think that is ridiculous. Anyone see Dr. Benarroch at Mayo? That is who we are supposed to see but I think if we are a checker then we just wait till any one of them could see us and I don't know one from another. He has many, many symptoms and hasn't been in school for a while, is up and down sometimes hourly but never feels very good and has a lot of weakness. He also has many episodes of extreme sweating (where he needs to change clothes or sheets) and major chills where he can not get warm. Just wondering if you think this sounds like Dysautonomia or POTS? Thank you!