stellakitty

Thanks Justin, I don't know how I missed your entire topic, I thought I had read just about everything on this board. My daughter has the exact thing you are describing, she is alert & can communicate with me, but has no control over her body movements, it the wierdest ting I've ever seen. As I was finisheing up my initial post, I heard a big thud upstairs, went up to check, it was my daughter on the floor, at it again, this is the second time today, this one went on for about 20 minutes. I've taken her to the er once, but I usually just let it run the course. We live up in the mountains outside of Denver, it takes a good 35 minutes to get to the nearest hospital, just a residual tremor is left by then. The ER docs don't know about POTS anyways. I did finally get a bp reading on her, (she shakes so much it read), last time her bp was 200/170 pulse 155, this is laying on the floor. She also has an event monitor from the cardiologist, I phoned this in also. This is a real drag for her. She is 14, she wants to take driving lessons in April, I'm preparing her for the fact that she will probably not be able to drive for at least a year afer her last seizure. She is now negotiating for a belly ring on her 15th birthday, gotta love teens.

My daughter was diagnosed with POTS in April with a postitve TTT. She has just about all of the symptoms associated with dysautonomia, she is a real mess. The doctor who dx'ed her moved back in June, he told us that her pcp could take care of her. Her pcp sent us to a dr. specializing in adolescent medicine (she's 14) because she apparently didn't know what to do. The new dr. took away her Forinef .2 mg, said she didn't that, she needed to go see a pschyatrists (sp) and gave me a script for Prozac? My daughter got worse without the Florinef, I called her pcp, her & the other dr had a powwow and he gave her back .1 florinef. I threw the Prozac script in the trash. That was approx. 6 weeks ago. It's been downhill every since then. She developed an awful "tremor" on her left side & her face went numb, this was after walking across our property (okay, it's 2 acres), I took her to the ER, got the standard "is there anything going on at home" and got sent home. The left side of her body did stop "tremoring" for the most part with the exception of her left leg, it just goes all of the time unless she has the muscle somehow engaged in activity. The dr in the a.m. clinic told me it was a nervous habit. Next time I took him a copy of the TTT and some literature i pulled off the web about dyautonomia. 2 weeks later I had to take her to the ER again for severe gut pain, of course they couldn't find anything, she got pain meds, we went home. She had a follow upappt with the a.m. dr. the next day, he admitted her to the hospital for gut pain, wrote this up as a "conversation disorder", had the mental health people come in, ( never heard what they thought, gyn came by & GI, all dr. dx'ed as conversion disorder based on the admitting dr. She was discharged the next day. I will also add, she was extremely nausead, had light & noise sensitivity, very dizzy, & had a horrible migraine. She got Immitrex & Zofran in the hospital for the migraine and nausea, but the am dr refused to give us a script for home. This episode lasted for almost a week. Last week, we were in the kitchen doing nothing really, she was leaning on the counter top with a magazine, started to shake, said she was dizzy, I had her lay down on the sofa then she started to have a "seizure". Her arms and legs were violently shaking, her pupils were dilated, she was conscious (sp), this went on for about 6 minutes. I had her remain on the sofa for another 20, she got up to eat a bowl of soup and she started up again just walking across the room. I just took her to her bed & gave her the last sleeping left of her script. She went to school the next morning had a "seizure" at school, we went to the er. She had a CAT scan that showed nothing. She was sent home with some Activan. We had a follow up appt with the am dr. the next day, her ordered an eeg she had that on Monday. since her first "seizure" she has had 11 more. We went back to the am dr. this afternoon to get the eeg results, it did not show anything. Then this moron proceed to tell me that the seizure activity is part of her "conversation disorder", we need mental health. I asked him if we could try a different med, other the Activan, that isn't working, he said no. I said but she needs to go to school, & he said "well I'm not going to give her anything because she's already over medicated." This dr. is upset because I took her to another cardiologist 3 weeks who put her back on .2 Florinef & added some Toprol, we have an appt with him on Thursday. The am dr. also told my daughter that a positve TTT doesn't mean anything & she just thinks she dizzy all the time, hello? Okay, why do I still take her to this adolescent medcine moron? I'm in the process of changing all of her docs, including her pcp. Unfortunately, it has taken me several weeks to get into another dr. as a new patient. We are seeing the new dr. tomorrow morning. Sometimes ya just deal with what's available. Does anyone have "seizure" type activity? Any one have this much trouble with doctors? I asked the am dr. if he read what I brought him, "this isn't a real disorder". Sorry about the long post, but we've had a rough week, my hubby is in Australia for 3 weeks, I gotta vent somewhere. Thank you Angie