Have questions about my son

[melly4]

Hi, everyone. My 12-yr-old is currently being worked up for possible pheochromocytoma. His blood pressure is sometimes high, but sometimes it is extremely low like mine. When I read a thread from a pheo website about disorders that mimic pheo, POTS was mentioned. He gets extremely dizzy when he stands up and he fainted yesterday. His cardiologist has pretty much blown him off without anything more than one EKG, one blood pressure reading, and an event monitor, which recorded his tachycardia, which the doc calls sinus tachycardia.

After the fainting episode yesterday, I chalked it up to orthostatic hypotension, which I knew he already had and can be common for boys his age. But I took his pulse while he was lying down and then while he was standing up. It went up more than 30 bpm. It was 115. His heart rate (resting) can go as high as 133. He is extremely physically fit, and we are going crazy waiting for test results from his pediatrician. He will have an abdominal CT Monday, and he is doing a second 24-hr urine. The first was positive for VMA. After his episodes, his feet and hands are cold and clammy.

My question is whether anyone here with POTS has episodic high blood pressure in addition to their low blood pressure? And did a tilt test diagnose their condition?

Thanks so much,

Melly

[Sunfish]

melly-

welcome. sorry you have reason to be perusing the web for medical info but glad you found this forum. it's a great place with lots of info & great people to go along with it. i'm sorry to hear that your son (and thus you & the rest of the family) are having to traverse the not always clear or friendly healthcare world but it does actually sound like things are at least being handled decently in terms of testing. the slowness of the process is frustrating but it is a start to know that the basic cardio tests are okay, and your pediatrician seems to be trying to find some answers. the tilt table test is the one thing that would seem to also make sense but if there are other avenues still being pursued it's not necessarily a must right now. especially if you already know there are issues with high/low BP & high HR, the tilt would likely give you more detailed info, but not necessarily a magic answer of sorts. still, i know that waiting for test results and any sort of answers is horrible; i can only imagine how much tougher it must be for your kid.

one thing...what is VMA? i tried to look it up and only came up with Video Music Awards & Veterinary Medical Association...i'm guessing these don't apply

you very well may already know this, but some of the blood & urine levels that when high are an indication for pheochromocytomas are also often high for POTS, although generally not quite to the same degree. so you're right to realize that pheo is only one of the options out there, albeit sometimes (from the little bit i know) it can actually be easier to treat than POTS.

regarding the high & low BPs, there are many on this site who have fluctuations; it's true that the "classic" may be low for dysautonomia folk, but high, low, & everything in between is possible. while many (including myself) with POTS do have low BP issues &/or also have NCS/syncope issues, low BP is not a diagnostic criteria for POTS...it's more about the high HR and the change upon standing (& sitting when more severe). it's also "normal" for a kid's resting HR to be higher than an adults...i'm not saying that your son's HR is normal, but a HR of 100 isn't "as high" as it is for an adult. i can relate though as i was a teen when i started having my worst issues & was an athlete too, so a high HR was very odd for me. is your son's HR every lower, such as when he is laying down? and is it lower sitting than standing? the changes in posture & the corresponding HR can also be a part of the diagnostic &/or treatment picture... personally i generally have BPs on the lower side but have had occassional spikes in the other direction, particularly immediately after a black out (almost as if my body is compensating in the other direction after my BP has gone really low).

the cold & clammy feet are very common territory for folks with any type of autonomic issues, often from either problems with circulation &/or sweating or any number of other things that no one yet understands.

so....my VERY long answer to your questions is that yes, people with POTS can have high BPs. and that, yes, tilt table testing can diagnose this. but a positive/diagnostic tilt test would not exclude things that can cause POTS or other autonomic problems secondarily, i.e pheo, addisons, etc...

hope something in my ramblings is helpful. one last thing is to tell you of a youth site that - if things end up going in an autonomic/POTS direction for your son - you'll want to take a look at. the organization is DYNA, for Dysautonomia Youth Network of America, and their website is www.dynakids.org.

good luck & hang in there while you're having to wait. i hope you get some answers soon!

:-)melissa

[melly4]

Melissa,

Thanks for the reply. My husband and I both work in healthcare, but POTS is something we are both unfamiliar with, but if our son doesn't turn out to have a pheo, the symptoms might fit and be worth mentioning to his pediatrician. We're not too happy with his peds cardiologist. He promised a stress test, but we never heard from him again. His pediatrician is being great, though.

My son is very cardiovascularly fit (does taekwondo about 12 hours a week--prior to us finding out about the fluctuating blood pressure). His pulse is generally around 70. He's very tall and thin. His pulse gets high when he stands up suddenly (he also gets very dizzy and sometimes faints). His pulse is very high when he has been standing up for any length of time. He's very intolerant of heat and sometimes gets low-grade fevers of unknown origin.

VMA is vanillylmandelic acid, a breakdown product of catecholamines that they measure, usually in a 24-hr urine. It can be elevated for a number of reasons, not just pheo. This sounds awful, but I wish it did turn out to be a pheo, because he could be treated and his problems would likely go away after surgery. I understand from what little I know about POTS is that it is so difficult to treat. I feel badly for those who suffer with it.

So, yes, his pulse is normal when he's lying down, but makes dramatic increases when he stands. I know I need to wait for these test results to come in, but afterwards, if he's negative for pheo, I will pursue having him see an electrophysiologist and an endocrinologist. I think there's still more to be researched, including a echocardiogram, tilt test, and some blood tests to rule out anything endocrine. I'm sure so many people here have gone through the test-after-test endless nightmare.

Thank you so much for the information. It's been helpful.

Take care,

Melly

[MightyMouse]

with Pheo, wouldn't the bp be elevated, even when lying down?? Pheo tumors pump out catecholemines all the time, not just when standing.

as for dx of pots or similar disorders, the tilt table test is the one to ask for--it's pretty simple to do. And, essentially, if you're taking his bp and hr from supine to standing at home, and keeping a log, that's what we'd call a "poor man's tilt test".

Do read through the main DINET site for info on diagnosis. http://www.dinet.org/how_is_pots_detected.htm

[MightyMouse]

and to answer your high bp question, yes. It's a misunderstanding of the POTS diagnosis to think that the bp is always low. It would be better described as dysregulation, not just hypotension. I have swings in both directions, even on meds. For example, on cozaar, today my bp is running about 130/100--a bit high, but it's been higher (like 160/110) on meds.

Good luck in finding the answers for your son and treatment that is effective and safe.

Nina

[goldicedance]

Ditto what Nina says. I believe the there is specifically a subset of POTS that includes people iwth high blood pressure. This group, into which I fall, is frequently the hardest to identify. I went through the screening tests for pheo and thyroid in the early stages of trying to figure out what was causing the tachycardia. Some ten years ago, much fewer docs were aware of POTS.

You should certainly try the "poor man's tilt table test." In fact, one POTS specialist thinks the laying, sitting, and standing (for as many minutes as tolerated) is better than the tilt table since it better mimics real life activities.