Thanks for all the support. I do realize POTS is treatable. Since my daughter was born there were immediate signs that there was something going on with her digestive track. We were told early on there was a problem with the nerves to her stomach. She has suffered since she was small with huge amounts of pain from eating or not eating.
She has been taken from specialist to specialist for years to figure out what the hell is going on with her. She started fainting at 10. She was cleared with a cardio of having low blood pressure, give her more fluids.
Last spring she was out of school for 8 weeks. Ironically, she returned and went to an event for girl scouts, a volunteer started talking to her, asked her why she was out and my DD told her. The volunteer told her I think you might have what my DD has. Gave her a website for me, and my DD researched it before bringing it to me.
We read the list and she didn't understand the list of symtoms fully. I explained them and she has or has had about 85 percent of them.
We took this to her pediatrician and I had already started looking for a specialist. He didn't feel like she had it. He had another patient who recently had been dx'ed with it and she had 12 concussions this year. The difference is when my dd feels pre synocape she sinks to the floor herself, then faints. This is because we found her draped over a gate.
We chose to take her to a specialist in POTS 4 states away for a quicker dx. Also we felt better treatment. The other person in his practice went to a children's hospital where it took her 4 months and multiple specialist to be diagnosised. My dd had all the tests withing 2 days with the specialist.
The dr's office said well the other girl was worse, with the 12 concussions. I was like yes, she experienced concusions, however please do not tell me who is worse and who isn't as my DD has experienced enmorous amounts of pain from birth on with no diagnosis and no real fix on how to help her with the pain.
Now we are in a phase of medicating her and trying to see what works and what doesn't. There is still disagreement between the pediatric gi guy and the pots specialist.
There is aniexty from my dd over social acceptance and feeling socially isolated from friends. There is huge stress on the idea of going to school, me even asking how she is feeling when she wakes up. The decision from the doctors is to remove her from school this year till she is medicated. The school system is being very unsupportive with the idea of virtual school.
Then of course there is the impact of my wh and my relationship. My dd is fully aware of what went on, she is a world class easedropper. She is very clearly stressed by what she knows. She is seeing a therapist.
She also wants Mommy, at night every night. She wants to sleep with me every night of the week. I am used to sleeping by myself.
My WH sleeps in another bedroom.