Daughter has bizarre seizure-like symptoms UPDATE 10.13, OP

Hi Zella,

I've mentioned on other threads that I have a 16yo DD with weird stuff going on too. She has had constant migraine with aura since 2010, POTS not due to cardiac reasons, and some hormone related issues (endocrinologist appointment is in December). Our best guess is dysautonomia brought on by sinus issues back in her early adolescence, coupled with undiagnosed /untreated PCOS. 

She has those spasms you describe, but nowhere near to the degree that your DD is experiencing. Hers are more like tics than seisures in that they display as a strong singular jerks, but they tend to cluster with one every few minutes for around an hour, but she's gone on longer. The clusters occur a few or several times a day, or sometimes not at all for a few days. Sometimes they're strong enough to knock her off her feet, and sometimes they're just mildly annoying.

Her neurologist isn't especially concerned about the tics. As far as he is concerned, the migraine, the tics, and the POTS are all just different ways that her illness is displaying. They're just symptoms, and in the big picture, they're details that don't really matter. From his POV, the root of all her problems is the same: the problem is occurring between the neurons, either they're misfiring or they're not receiving or a bit of both. He's had her on a brief dopamine trial and several serotonin drugs, but nothing has worked yet. I'm counting the days until the endo appt.

DD sees a naturopath on a weekly basis to help her cope with her pain. Maybe that would help your DD too? He works on her neck and shoulders and he gives her chiropractic adjustments. She always feels better, but it's short lived. She tenses up in her sleep in response to the pain, and she grinds her teeth (the orthodontist *loves* us.) She has stretching exercises too. 

She knows she won't ever be "cured," and that the goal for us is learning how to best manage her illness. It's a lot for a kid to deal with, and she's seen psychologists and a psychiatrist, and she's now seeing a counselor. Your DD is older than mine, but it's still affecting her in a bad way. Does your DD have the opportunity to talk to a therapist? It might not help her body directly, but if it will help her spirit, that could help her body indirectly. You might want to go see someone too. It's so much stress on a mom, and you have your own health issues on top of that.  

You're both in my prayers.

Thank you so much. She's going to start seeing a nautropath. Her neuro is confident that she doesn't have any kind of dysautonomia, and POTS doesn't fit. Thank goodness (that is a terrible disorder). Interestingly, she probably does have PCOS based on family and personal history, though she doesn't have the side effects such as weight gain, glucose resistance or excess hair growth, thank goodness. She's in counseling, but needs a better counselor and more frequent sessions; something that's going to happen soon. I think Tia realizes that she won't ever be cured. That's a hard, hard thing to live with. I try to encourage her with my own story. At her age and throughout my twenties, I was as sick as she is (and frankly, sometimes sicker). I still managed to get married and have babies before I was 30, and though my life has been rather a mess, and certainly not what I'd hoped, I can mostly function. And marriage and babies is what she longs for more than anything. Again, thank you for your concern and caring.

Although her diagnosis must be a relief your sadness for her is palpable. I wish you both peace of mind.