I'm meeting with my 12 year old son's prinicipal tomorrow. My son has always been a high achiever, mostly A student, and is now getting D's and F's. His teachers were good last quarter, and forgave missing and late assignments, and so he received mostly B's. But, I think that once he received his POTS diagnosis, they thought it would all magically get better. It's not better, and at times it seems worse. I told them 3 weeks ago, that I am not worried about him academically, but am worried about the social emotional issues that go with this disorder. I do not want his 7th grade year to be the one that made him hate school. I have given them lots of information about POTS, but I don't think they get it, or even that it is real. Garrett even commmented that he thinks teachers think he is faking because once in awhile he will have a good afternoon, and be laughing and joking with friends.
Do any of you have any experience with 504's, or any advice at all about this?

Hi Carolann, I was diagnosed with POTS when I was 16. I fortunately, was already being homeschooled. I don't know if this is an option for you or something you'd even like to do, but I think it's worth considering. With POTS everyday is different. It's so hard to predict how you're going to feel or what you'll be up to. Our flexible school schedule made it easy for me to work around my disorder. Bad grades can look terrible later in life and prevent you from where you want to go, but I've been able to really get things done in my own time. That way I could still do my schoolwork and not have that negative mark against me. Just an idea. Homeschooling isn't for everyone!

Hi Carolann,

I'm nearly 52 and was only diagnosed with POTS last year (at long last) but I did experience the 'phenomenon' of people thinking that now I had a diagnosis, I had a cure.

I don't know about keeping your son in school or not, but his teachers should be made aware that a diagnognosis is NOT A CURE. There is some treatment that works for some. And that POTS people can have good hours, days, etc when it looks like nothing is wrong with them. But just because they have some periods where they look good does not mean they feel good, or when they are having some fun, well maybe his teachers should be made aware of the fact that that fun he's intitled to have...well....that he just might pay for it later with increased POTS symptoms for a while.

I have a son who is ADHD and was also dyselexic -- both have improved. He's 27 now. He's smart and whitty and has lots of friends but could not read until he was 14 and altough always popular at school he developed really low self esteem about his 'intelligence.' He was good at sport so I encouraged him in that.

Mostly I wish I had done this: taken him out of school and homeschooled him and kept him in touch with friends, and made sure he had new friends through his sport. POTS is not dyslexia or ADHD but when my son was at school 'ADHD' was thought to be a load of rubbish by many people --that kids with ADHD were just disruptive to the class and attention seekers etc.

Now, it's more accepted. It's unfortunately going to take time for POTS to be accepted.

Despite him having a hard time in class though, the thing that swayed me to keep my son in school was that he loved going. He's incredibly social and wanted to got to school to see his friends.

Looking back, before I took him out of school I would have tried this, I would have asked for a meeting with the head of the school and his teahcer/s and asked for a specialist in ADHD to be there (or maybe in your case, a doctor who knows about POTS)and made sure the teachers knew how to learn new things themsleves.

The thing that helped my son was that he was the best sportsman in his school and had a lot of friends but those school years did scar him. It's only now at 27 that he's learned to be comfortable with who he is, and has learned how to use ADHD to his benefit -- meaning he excells in things that hold his focus. His two oldest siblings when to schools for clever academic kids and all have done well but my youngest son is now the biggest reader of my three children. And he came from a house that was full of books.

Hope my experience as a person with POTS and a son who did not have POTS but a condition that was almost laughed at when he was at school helps you a bit.

Take care, and if my words are wrong or I've made lots of typos it's not dyslexia but POTS

Thanks for the replies. Our meeting was rescheduled for tomorrow.
I have thought about keeping him home, but he really does love school. The ironic thing here is that I am a teacher myself, and worked at his school with his teachers for 5 years. I do not work in his school at present, but its been eye opening being on this side of the table. It is very difficult to think of my former colleagues treating him this way.
I just spoke to the county person who helps with 504's and Other Health Impaired spec. ed. programming. I think it will really come down to: Do you want him in school? If so, what he gets done in school may have to be enough. I don't think he can physically or mentally do both the homework, missed assignments from absences and attend school full time.
Thanks for the support and advice .

I have had over 16 years of this to deal with with both of my daughter's school time combined.

You have got to be a thorn in the schools side.

The squeaky wheel gets the grease.

Rattle cages.

I have found most teachers just don't think that kids are really that sick.They are just trying to get an easy ride and they have a mother that is over protective.

Atleast that is how it was with my girls.

I am so glad we don't have to deal with the school system anymore.

This is going to be tough but you can do it.Be strong.You are his only advocate,remember that.

Sheila

Carolann, my 14yr. old son has dysautonomia and POTS. Before he had a diagnosis, he missed most of his 7th gr. year. It was only when we got an initial diagnosis of gastroparesis and he had an NJ tube hanging out of his nose did the homebound teachers start to believe he was really sick. Some of these teachers he has for 8th gr. and they seem to understand. But we've had a few incidents with some new teachers and even the school nurse. She told my son that he was bothering her so often that maybe he should just stay home! One thing that helped us with his 504 was the dysautonomia article about education and this disease, found on dynakids.org. I made sure every teacher and anyone associated with my son received a copy of this. Right now, my son goes in for 3 periods--social studies, math, and science. The school has provided special transportation because he arrives after homeroom and leaves before lunch. I agree that the squeaky wheel gets the grease, but I wouldn't hesitate to consult with a lawyer if you are being treated unfairly. It truly is discrimination. Unfortunately, sometimes this is the only way to get your principal, superintendent, and school board to take you seriously.

My daughter had a very hard time with school. With the help of her doctor we got the documentation together and the county home schooled her. She ended up being well enough to attend her senior year and really enjoyed being with her peers. A site that really helped with these issues was DYNAkids.org. As mentioned by jdw, they have alot of information on there site about getting thru the hurdles of the educational system. I also found that bringing cookies in and always saying things like "I know we all want what's best for Andrea " and "We're all on the same team" made it impossible for them to say well, no we really don't want to help her. I hope this helps.

Jennifer

Thank God for www.dynakids.org! I did the same thing that jdw and Jen P did. I printed out copies of the "schools" section on the site, and placed it in front of everybody at the school meeting. We had to threaten to get a lawyer to get some action because they were going to kick my son out of school for "too many absences" etc. It took us 2 years to get a diagnosis, and my son was a high acedemic achiever. He wasn't skipping school!

We got a "Section 504" for him, and then things started happening for him at school....all kinds of accomodations! They cannot discriminate against a student because he can't attend school. It's a medical disability! My son is now in his Senior year, and attends 1/2 days. He loves to see his friends, and is doing well in the classes that he can attend.

Keep checking back at www.dynakids.org, they sometimes update things like medical articles. I also found a letter from a homebound teacher that taught a POTS student, it was very informative, and lets the school know that you son/daughter is not making up these symptoms, and struggles everyday!! The school needs to give them encouragement!

We have learned most POTS patients are gifted students.

My daughter was ranked first in her class of 220 prior to diagnosis. She was homebound for 10/11 grades. She returned to school this fall. She was attending school Mon/Tues home on Wed. and at school Thurs/Fri.

Her 504 modifications are:
Shortened assignments
More time to complete assignments
Reteach concepts (memory problems)

After starting B12 shots she is now attending school full-time. She will graduate this year ranked 8th.

Does anyone know if POTS is hereditary? My 9 year old is showing some symptoms that I have! But I don't know if I'm over reacting when he says he is dizzy or his heart feels like it's racing or he has head rushes! Just wondering what symptoms some of your children had and what did you tell their doctors to test for! Thanks!

Laura