Friday, February 10, 2017

POTS Stinks

Let me start by saying I tip my hat to all the parents out there who have children with chronic illnesses, disabilities and special needs. It’s exhausting, and you guys are rockstars!

If you’re new to the blog (and let’s be honest, I update so infrequently it’s a miracle anyone is here at all!) let me catch you up.

About two years ago, Princess C was diagnosed with dysautonomia and borderline POTS (Postural Orthostatic Tachycardia Syndrome). For those of you not familiar with the medical jargon, it means the part of her nervous system that controls her body’s automatic functions, like her heart rate, the ability of her veins to constrict, how her GI system processes food, and her breathing, doesn’t quite work right. She’s considered borderline POTS because she has all the symptoms, but they aren’t quite severe enough to meet diagnostic criteria.

It took us about a year to really get her symptoms under control, during which we homeschooled, and physically she was doing well. So well, in fact, that we decided to send her back to public school.

Since then, it’s basically been a nightmare. Her symptoms have been relentless, and I think she’s missed almost as much school as she’s gone to. Although her last report card said she only missed six days of school. I think someone fudged the paperwork somewhere :P

We have an appointment with her specialist next week to see if we can get some accommodations for school. Some days, she’s just too down to go to school. Fainting, vomiting, that sort of thing. But then she has those in-between days-what we’ve dubbed her “dizzy days”-where she’s lightheaded and unsteady on her feet, but fully capable of sitting in a chair and following along in class. Which I know because we’re still doing her at-home Spanish classes through the Spanish Homeschool Academy, and I’ve only had to cancel a few of them.

Until we get those accommodations, however, we’re still playing the absenteeism game. Which means long stretches of days where she needs someone to make sure she gets liquids and foods and safely to and from the bathroom, while we’re both agonizing over the amount of school she’s missed and wondering if this is going to be the day we get the call from CPS.

I don’t think it will happen-she’s got a GREAT principal this year (she’s in Jr High now) who has worked closely with her physicians to get her back in school. She was actually Mr. A’s third grade teacher, and we LOVED her. But the year she was sick and in and out of the hospital without a diagnosis, she missed so much class it was “mentioned” more than once. Right along with holding her back, despite her grades being high enough that she was still on the honor roll.

We were all stressed out and on edge until one of the nurse practitioners at her pediatrician’s office said enough was enough, pulled her out and got her a tutor. When she did go back, it was half days only for the rest of the year.

Know who told us a tutor was an option? Her doctor’s office. Know who told us half days was an option? Her doctor’s office. Know who didn’t tell us diddly, and made it sound like we were going to get a visit from CPS, and told us that having a tutor for an extended length of time wasn’t an option and if that was the case, we needed to homeschool?  

The elementary school.

To be fair, homeschooling for a year did turn out to be an excellent option while we got a treatment plan in place. She was able to take days off as needed, and work at her own pace around doctor’s visits and PT. We all appreciated the huge breath of relief it gave us not to be agonizing over whether or not she was going to make it to school that day. It would have been nice, however, had we not been made to feel like that was our ONLY option.

Oh! You’re probably sitting there wondering why we re-enrolled her in the first place in homeschool was such a good choice. The problem was, Princess C is a social creature. She loves being active, and really needs to be around people and get involved in extracurricular activities. With her dad working full time, and me working two jobs and going to nursing school, she wasn’t getting that. Once she started feeling better, it wasn’t doing great things for her coping skills.

She’s been MUCH happier since going back to public school. They set up her schedule so her best friend is in almost all her classes (not sure if that was a great idea or an awful one, but the girls are happy with it!). She was chosen for select chorus, and has a part in the school play. It’s exactly the sort of school experience she needed.

After having her home sick for the better part of the last two weeks, however, we’re all exhausted. Thank goodness it’s the weekend. I have to take G-money for a placement test for the STEM program tomorrow morning, but after that we have the rest of the weekend to rest and recharge.

POTS stinks.