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My daughter was diagnosed with POTS in March. She went from a 4.0 student to barely being able to go to school let alone do homework. We just got an IEP, and I am wondering if any of you have expereince with that and could offer suggestions on what to put on it. We are looking at a later start in the day, like 3rd hour. She is also thinking about taking a couple classes by correspondence to lighten her load at school and be more flexible with homework.

The brain fog has been SO bad for her even with her other symptoms under pretty good control. Any suggestions there??

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Aquadiva,

Oh my goodness, can I relate! My son is a high school sophomore and developed POTS in September, just a few weeks after the school year began. He felt so sick for the first 5 months. He withdrew from a couple of his classes and his wonderful school team rearranged his schedule so he didn't have to be in school in the mornings. He arranged to complete 2 subjects independently at home, and needed to be in school for 2 more. Well, it didn't work out great. He didn't make it often enough to the 2 afternoon classes and won't get credit for them. He was only able to do one subject at home. So the upshot is, he'll only get a grade and credit for one class.

Dan had a 504 plan; I don't know how much different that is than an IEP. The school offered a home tutor, but because Dan was sick so much, the tutor wasn't really the issue. The issue was whether or not he could concentrate. The one thing we would have liked would have been to have his classes videotaped. The school refused and we didn't fight their ruling. If Dan is not in school full time next year, we will fight for that. With videotapes, he could catch up when he feels better, like in the evenings.

I hope your daughter's high school staff is helpful and supportive. Dan's is, and it makes all the difference. Try to develop a great relationship with the guidance counselor. Danny is a little bit better these days and I'm hoping that the next school year isn't the disaster that this year was.

If you want to send me a private message, I'll be happy to get into more detail about it all.

Good luck!

Lenna

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I myself am a high school sophomore right now. It has been rather difficult, but I have managed to keep up my 4.00. I am not always in school but I go in after school when I can and get the work to make things up. I really have to work hard at my foreign language, as I am not good at spanish at all, and I dont enjoy it, so learning the things on my own is quite tricky. I am way behind right now and have about 6 tests to take in the next 8 days of school I have, but it will hopefully all work out well, and I will still be able to get an A, but if not, I do also realize there are more important things in life than getting amazing grades in HS, especially someone in my condition.

Right now I am trying to write a paper for English class, and then tomorrow I will work on my speech for it. But it is really hard for me to think right now, and I just have to keep making myself work at it, because I know it is something I have to do. I like to tell myself that if I get something done now, then I can go pet my bunnies later, or something to that effect. Its really hard to keep doing that when I just cant concentrate or think clearly...but I have to get it done, and I cant just stop an pity myself for what I cant do.

I hope things get better for your daughter soon!

Mary, you can PM me anytime with questions if you need to.

O and I do not have a 504 or an IEP.

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Cerefolin helps with brain fog. You could speak with her doctor about getting a prescription for it.

I have no experience with IEPs, but I hope that you can get the accommodations your daughter needs at school.

Rachel

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Hi Aquadiva-

I have a freshman in high school similiarly afflicted. I have found the most help on: pediatricnetwork.org

This is a site dedicated to children/teens suffering with orthostatic intolerance (POTS/NMH/NCS), chronic fatigue syndrome, and fibromyalgia. As you probably know, there is much overlap between the conditions. This site has sample 504 plans and IEP's and lots of other help.. Check out the school section.

Best of Luck-

Julie

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Our son, who's now 25, had an IEP. Though I resisted at first, this was really the best way as all of the teachers had to honor it and work with it. Without the IEP, we ran across the usual non-helpful attitude of "well he's going to have to learn how to deal with this sooner or later..."

8 to 10 years ago, not much was known about POTS aside from the orthostatic tachycardia and the need for fluids and salt. So he was sent off to school early each morning. He often fell asleep in lecture classes and had hour long near-syncopal episodes in gym class. If I had it to do over, I'd have pulled him out and home schooled him.

If your child has any time of wakefulness during the day, a home tutor is a good idea to try, but Mike's "awake" time was so unpredictable, we didn't even fight for that. Plus he also had the constant "on edge" feeling that's typical of the adrenergic POTS, so I guess I would say that any solutions that you try would depend on the specific POTS symptoms.

Bottom line, I would have been less accommodating to the school and advocate more for my son. But back then, great resources like DINET weren't around. Best of luck.

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Thanks for all your replies and suggestions, I appreciate it! We are just trying to get through the last days of school. She is very stressed with the make-up work from 3rd quarter still hanging over her head. She should be able to complete it but only if she is feeling well. I guess all we can do is hope for the best!

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