I Need A Concise Description Of Pots

[Lenna]

Hi,

My son is in high school but is trying to take a math course at a local college (math seems to be the only subject that still comes easily to him). We want the college to give him the same type of accommodations that he gets in high school. They asked for a letter from his doctor, and it took me weeks to get the doctor to begrudgingly write the letter. Now the college has some follow-up questions and I know that I'll never get the doctor to write another letter. I'm hoping that I can just point to some reputable websites for the answers they're seeking.

The biggest misunderstanding that the college has is that people with POTS are symptomatic only when they're standing up. They want to know why he can't just take the class SITTING DOWN? All the websites I've looked through - even the Dinet site - makes it sound that way. The Dinet description of POTS starts out with: this disorder is characterized by the body's inability to make the necessary adjustments to counteract gravity when standing up.

I need to find a concise article that I can print out or a website that I can point to that focuses less on the tachycardia when standing and focuses more on all the other stuff that happens all the time.

Does anyone have any suggestions?

Thanks.

Lenna

[daisy]

Hello,

You're right - It is very hard to find an article about POTS specifically that doesn't mention the symptoms arising upon standing since that is the technical definition of POTS but many people do have symptoms sitting down (like me!) but it's easier to make a clinical diagnosis when people are upright I suppose. Would it help to just cite articles about dysautonomia in general? I went through my bookmarked articles about POTS and did come across one that talked about symptoms sitting down and also another article about dysautonomia - maybe they will help? Here are the links:

http://www.associatedcontent.com/article/1166419/symptoms_causes_and_how_to_treat_dysautonomia.html?cat=5

http://emedicine.medscape.com/article/902155-overview

Good luck to you and your son!!

[Connie]

Hi,

My son is in high school but is trying to take a math course at a local college (math seems to be the only subject that still comes easily to him). We want the college to give him the same type of accommodations that he gets in high school. They asked for a letter from his doctor, and it took me weeks to get the doctor to begrudgingly write the letter. Now the college has some follow-up questions and I know that I'll never get the doctor to write another letter. I'm hoping that I can just point to some reputable websites for the answers they're seeking.

The biggest misunderstanding that the college has is that people with POTS are symptomatic only when they're standing up. They want to know why he can't just take the class SITTING DOWN? All the websites I've looked through - even the Dinet site - makes it sound that way. The Dinet description of POTS starts out with: this disorder is characterized by the body's inability to make the necessary adjustments to counteract gravity when standing up.

I need to find a concise article that I can print out or a website that I can point to that focuses less on the tachycardia when standing and focuses more on all the other stuff that happens all the time.

Does anyone have any suggestions?

Thanks.

Lenna

Lenna,

I found that Dyna Kids has a big article that lists a lot of symptoms to help deal with educators. I printed this article out every year and presented the article to my sons teachers. A lot of people have trouble understanding the illness because it is "invisible to the eye" and they look ok to most people. I even had one homebound teacher tell me "the perception is that he is lazy" - this was even with the articles. I hear colleges are more difficult to convenience. Good luck.

The website link is http://www.dynakids.org/schools.jsp and again the article lists a lot of information to help with schools.

Hope

[Christy_D]

Lenna,

Dynakids, besides having the pamphlet, also has a booklet you can give to educators. I think it is like 30 pages long or so. This would definitely be a good place to get printed materials for them.

Christy

[PotsMom]

I had a doctor recently point out something that I think is helpful. He emphasized that POTS by definition is a syndrome - a group of symptoms that occur together and are characteristic of a disease or a condition - and that while orthostatic intolerance is a hallmark manifestation, it is one piece of a collection of many other manifested symptoms of the syndrome. As we all know all too well, this is very true, so I think focusing on the fact that it is a syndrome and then listing some of the various manifestations that your son has and that are common to many POTS patients would be helpful.

At one point someone shared with me some general patient information that Dr. Fischer at Mayo gives to patients. He also emphasizes the fact it is a syndrome and that while POTS is characterized by excessive heart rate with standing, that it is not just the changes in heart rate but a collection of many symptoms.

Understandably many focus on and "get" the postural tachycardia part when it is explained to them, but for most patients it is usually the many other manifestations that are the most debilitating, and unfortunately that fact, the syndrome, is lost in translation and of course is much harder to explain as well.

[Lenna]

Thank you so much for your help! I think the Dynakids website will do the trick. The other articles recommended will be helpful as well. Emphasizing dysautonomia rather than just POTS will make it much easier to explain. Cheryl, do you know how I can get my hands on the overview that Dr. Fisher gives to his patients? I listened to one of his podcasts and thought he was great.

Thanks again-

Lenna

[Christy_D]

Thank you so much for your help! I think the Dynakids website will do the trick. The other articles recommended will be helpful as well. Emphasizing dysautonomia rather than just POTS will make it much easier to explain. Cheryl, do you know how I can get my hands on the overview that Dr. Fisher gives to his patients? I listened to one of his podcasts and thought he was great.

Thanks again-

Lenna

Lenna,

Dr Fischer emailed me a booklet about teens and dysautonomia. I can email it to you if you want. PM me with your email address.

Christy

[PotsMom]

I'll bet that is the same info I have. I had heard he was going to put it in pamphlet form. The one I have is a more informal document with info for patients; however, the info there is some of the best general info I have seen about POTS. Lenna, as discussed I'm sending you what I have - I would guess the info in these is very similar.

[Lenna]

Thank you Cheryl and Christi. What you sent were not the same thing but both are so useful. This forum has come through for me again!

Lenna