POTS in 12yo daughter
My daughter is being looked at for POTS. She has many of the symptoms. Especially anxiety attacks when she wakes up for school which inhibit her from going.
I’m wondering how the 2 are
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What are her other symptoms? Has she had a Lyme test? An autoimmune problems? Dysautonomia? Other reasons for anxiety? Has thyroid been checked? Does she stars when she gets up in the morning?
How is her doctor responding to her symptoms? Does she need a functional medicine doctor?
There are clinics for POTS and dysautonomia and treatments (small dose hydrocortisone as I remember).
In my experience, strange things happen around that age due to hormonal changes- and sometimes ease- just a note of possible hope.
So it started about a yr ago with stomach aches. Brought her to GI who took X-rays and saw big block up. She was still “going” because the new poop was going around the blockage and causing the stomach pain. She did a few clean outs and is currently on miralax 2x day.
Late last yr she started getting headaches and dizziness, seeing spots and nausea.
Being at the puberty age I assumed was the cause combined that her older sister has migraines.
Back to the pediatrician and they said it was likely. Drink more water, headache journal etc.
Because she missed a lot of school due to dr appts she started having “anxiety attacks when I woke her up from school. She said she was nervous about missing and going back cause of kids judging her for it. Went to the school found out there were no issues there. It’s now been 2 wks since she has gone. But she doesn’t get attacks like that any other time.
Went to neurologist today who thinks it’s POTS. Did the blood work for Lymes etc, ekg today. EEG scheduled for next week
Lyme testing should be Western Blot, not Elisa, and some docs think one band that is Lyme-specific is enough for diagnosis, others want more. You might want to consult a doc who is "Lyme literate." Go to lymenet.org for referrals.
The blockage can be from a number of things, including endometriosis. There is a doctor Robbins in Maine who does surgery for that that is very effective. Mentioning him just in case.
The school should be accommodating her. I had a kid like this and consulted a lawyer for one hour. The school then made sure that each teacher in each class on each day would provide what was done in class, any materials used/notes, homework assignment and even tests and exams. I picked it up each day. My kid went in and out of school as she was able, but teachers did the packages regardless. My kid even participated in a play and in music, despite not being in school on a particular day. We argued EC's were important for her development.
My kid, fortunately, was not embarrassed and was voted most likely to succeed despite being out of school for the previous 3 months!
It can take a long time to figure out what is going on, and it may be multiple things. Beware of the attitude of health professionals who start telling you it is psychological. I strongly suggest a functional medicine doctor who will look at the big picture and not just one symptom.
With the POTS diagnosis, did they do a tilt table test? EEG's don't often catch much, even for kids with seizure disorders, but what the heck.
Migraines can start at this age. If they happen more than once a week, she should have medications. But it takes awhile to get the right one.
Believe me, this can all ease up in time but you need the right doctors, and that is the hardest part.