New York Times Article

[Daveb]

It's good to get some publicity out there. I think POTS is slightly increasing in the public's and medical field's awareness. Here's a link to an article in today's Times: http://www.nytimes.com/2011/10/18/health/18brody.html?_r=1&ref=science

The article is pretty superficial and gives the idea that POTS is easily managed (the boy's experience in the article has definitely not been that of my son's, who is still fighting hard every day just to get out of bed), but it's still good to get some information out there.

[Yolaclover]

I'm glad they did this article, it's not a great description of POTs, better than most and it is great for parents to see this and recognize symptoms in their kids.

[songcanary]

Yes, it is an interesting article. And I agree that every little bit helps, thanks for posting. Wishing your son better days ahead!

[MomtoGiuliana]

It’s interesting that many articles (and doctors) link this condition to people who are high achievers. I find this annoying—would they link diabetes or any other physical condition to a personality type?

Also as stated above, this article does not reflect the reality that some people are severely affected and do not respond to treatment. So the comment “the messages of how you feel are not reliable” also irks me. I agree in my case, but too many others are truly too weak to function normally…and I also went through a period where I was too sick to.

But overall I agree it is great to get some more coverage.

[kclynn]

Dave, my son also has had a very difficult road so far. Last few weeks have been awful, with him missing 5 days of school in a row (and many misses prior). He is on part time. It is so hard to describe this condition because there are so many variances to it. The boy in the article may have an increase in symptoms at any time, or he may not. I do think doing everything possible to keep moving is the number 1 priority we have here. That said the 5 days he just missed he did very, very little moving and sometimes literally could not answer a question because he couldn't cognitively put the words together. For many POTS is very up and down and I believe if my son takes advantage of when he is feeling a little better to be active then the times he is down may not last as long. Sometimes I feel like just saying "I will get back to you all on this in a couple years because I think no one really knows." All I know is that today he went to school and came home happy. Maybe we should all write the author a nice letter and volunteer for a follow-up article that would encompass the many different faces of pots. Oh, and I don't get the high achieving description either.

[sugartwin]

For people in whom the onset of POTS wasn't sudden they've usually had elevated levels of catecholamines in their blood for awhile. Before POTS becomes pathological it can manifest either as anxiety or "goal-directed activity." That's my idea anyhow. And doctors don't have any trouble attributing behavioral traits to a physical illness if they observe them. Like in Williams Syndrome, for instance.

"The messages of how you feel are not reliable," though. Really? If you feel badly, you feel badly. If you feel nauseated, you're nauseated. What exactly are they trying to say? It's like they're giving with one hand and taking with the other, like my grandmother used to say. Either POTS is a legitimate illness or it isn't. Because if a doctor says something like the way they feel isn't "reliable"casts an air of doubt over the whole thing.

[yogini]

Thanks for sharing. It's not comprehensive or perfect, but I'm glad POTS made the NY Times. I especially wish they had mentioned that POTS is not limited to kids. These articles always seem to be one person's story. Since there is no typical POTS patient and we are all so different, the articles are never quite representative. Considering that some people are now calling it "Grinch Syndrome" even anything calling it POTS is a relief...

[potsyturvy]

I'm with Yogini.. I hated the article calling POTS "Grinch Syndrome". This wasn't a perfect article, but it was much better than most I've read.

[Daveb]

It’s interesting that many articles (and doctors) link this condition to people who are high achievers. I find this annoying—would they link diabetes or any other physical condition to a personality type?

Also as stated above, this article does not reflect the reality that some people are severely affected and do not respond to treatment. So the comment “the messages of how you feel are not reliable” also irks me. I agree in my case, but too many others are truly too weak to function normally…and I also went through a period where I was too sick to.

But overall I agree it is great to get some more coverage.

Yes, I agree about the overachiever statement. The research does not bear that statement out. My son, while, fortunately for him, very bright, was not an overachiever when he came down with it. Ironically, I think his experience with POTS has changed that, as he now feels that he wasted his talent and wants nothing more than to participate in school and do homework.

[Daveb]

Dave, my son also has had a very difficult road so far. Last few weeks have been awful, with him missing 5 days of school in a row (and many misses prior). He is on part time. It is so hard to describe this condition because there are so many variances to it. The boy in the article may have an increase in symptoms at any time, or he may not. I do think doing everything possible to keep moving is the number 1 priority we have here. That said the 5 days he just missed he did very, very little moving and sometimes literally could not answer a question because he couldn't cognitively put the words together. For many POTS is very up and down and I believe if my son takes advantage of when he is feeling a little better to be active then the times he is down may not last as long. Sometimes I feel like just saying "I will get back to you all on this in a couple years because I think no one really knows." All I know is that today he went to school and came home happy. Maybe we should all write the author a nice letter and volunteer for a follow-up article that would encompass the many different faces of pots. Oh, and I don't get the high achieving description either.

KCmom, thanks for your reply. I wish you and your son all the best. Mine missed a year of school last year, but is back this year. It's a grind for him, he's been missing more lately. We're looking at moving to more of a part time schedule so he can maintain his exercise program, which he is not able to do after a full day of school.

[MomtoGiuliana]

I think the reason I find the overachiever statement annoying is that when I was initially sick and with no diagnosis my ob/gyn told me that I was a perfectionist and made unreasonably high demands on myself--uh, no, I wanted to feel/be well! So I think that perhaps an undiagnosed patients' behavior can be misconstrued, more than anything else. On top of the fact that once you get the diagnosis many doctors don't grasp how disabling POTS can be.