Adult And Pediatric Pots Apparently Are Not The Same

[firewatcher]

J Pediatr. 2011 Oct 11. [Epub ahead of print]

Postural Tachycardia in Children and Adolescents: What is Abnormal?

Singer W, Sletten DM, Opfer-Gehrking TL, Brands CK, Fischer PR, Low PA.

Source

Department of Neurology, Mayo Clinic, Rochester, MN.

Abstract

OBJECTIVES:

To evaluate whether the use of adult heart rate (HR) criteria is appropriate for diagnosing orthostatic intolerance (OI) and postural tachycardia syndrome (POTS) in children and adolescents, and to establish normative data and diagnostic criteria for pediatric OI and POTS.

STUDY DESIGN:

A total of 106 normal controls aged 8-19 years (mean age, 14.5±3.3 years) underwent standardized autonomic testing, including 5 minutes of 70-degree head-up tilt. The orthostatic HR increment and absolute orthostatic HR were assessed and retrospectively compared with values in 654 pediatric patients of similar age (mean age, 15.5±2.3 years) who were referred to our Clinical Autonomic Laboratory with symptoms of OI.

RESULTS:

The HR increment was mildly higher in patients referred for OI/POTS, but there was considerable overlap between the patient and control groups. Some 42% of the normal controls had an HR increment of ≥30 beats per minute. The 95th percentile for the orthostatic HR increment in the normal controls was 42.9 beats per minute. There was a greater and more consistent difference in absolute orthostatic HR between the 2 groups, although there was still considerable overlap.

CONCLUSION:

The diagnostic criteria for OI and POTS in adults are unsuitable for children and adolescents. Based on our normative data, we propose new criteria for the diagnosis of OI and POTS in children and adolescents.

Copyright © 2011 Mosby, Inc. All rights reserved. PMID: 21996154

[ramakentesh]

Apparently hypertensive responses to orthostatic stress only occur in adult populations with POTS. However the cutaneous nitric-oxide mediated abnormalities first found in pediatric POTS patients have also been found in adult patients:

Elevated constitutional nitric oxide in Normal Flow POTS;

in pediatrics:

http://www.ajconline.org/article/S0002-9149(10)00783-6/abstract

and in adults (average age 21):

http://ajpheart.physiology.org/content/301/3/H704.full

Increased angiotensin II and reduced ACE2 activity in LFP in adults:

http://www.heartrhythmjournal.com/article/S1547-5271(10)01204-X/abstract

http://www.clinsci.org/cs/110/0255/1100255.pdf

Which were originally identified in pediatric POTS patients as this was the original exclusive patient group of the Centre for Hypotension.

It should also be noted that the first of the two angiotensin II articles basically confirms that this impaired angiotensin II catabolism basically explains the renin-aldestrone paradox in POTS, increased angiotensin II results in increased norepinephrine, but reduced norepinephrine re-uptake and the finding of increased supine sympathetic activity with blunted response to orthostatic stress.

[bkweavers]

I think it's so different for adolescents because you throw puberty into the mix and all those changes going on in their bodies. When my daughter was in the first year of having POTS, she had her period twice a month and each time it would send her body into horrible dizziness, fatigue, and headaches. Thankfully, her cycle became normal after a few months of this. I know Dr. Grubb told us at one point that due to puberty a medication may work at first and then due to body changes, it may stop working.

I have to say though that I only know what it's like from the adolescent perspective. My daughter is so much better than she was 2 years ago and many adults on this forum have not improved and/or have gotten worse.

Brenda

[ramakentesh]

I feel sorry for children and teenagers that get POTS. I had enough trouble dealing with it when I developed it in my late 20s.

[jesse1919]

Yeah, at least I made it through college before I got POTS. Sorry to be a pessimist but it's awful to use a particular BPM increase to define POTS regardless of age. They just don't understand it well enough to come up with a better definition. It just seems like more statistics nonsense without real understanding of the underlying physics.

[icesktr189]

What group would I fit in? I came down with it at 17, but diagnosed at 18. At 22 I am actually worse, so i dont know...

[ramakentesh]

That depends entirely on who you read and believe.

[kclynn]

Jesse, I agree. Wish I could see the whole study. Pots wouldn't BE pots without the "S" (syndrome). Also, when my son went to Mayo for ttt his heartrate was barely up 28 bpm and they called it within the real of autonomic dysfunction and pots. My son had another ttt somewhere where he could actually get treatment 4 months later and his increase in bpm was 50 (over the new criteria apparently). So what happens to those who are sick and don't meet the criteria? I AM glad they are doing research, I just hope they use it as pieces of the puzzle vs one diffinite almighty declaration. Would love to hear what Dr. Grubb has to say about this.

[yogini]

I think if I'd had POTS as a kid, I'd have tried to study medicine and dedicate my life to coming up with a cure for this. Most kids outgrow it, so I'm not sure if I feel worse for them or for adults that don't improve. Stinks either way!

[kclynn]

Yogini, I think there are a number of kids who are outgrowing this who are going into medicine. I can only think they will make excellent Dr. what ever their speciality will be.

[juliegee]

What I'm hearing is that the HR was high in the controls as well as the kids with POTS, so the researchers are concluding that different diagnostic criteria should be applied to DX kids.

My son was DXed at 12. He's almost 19 and still sick. No matter what diagnostic criteria is/was applied- he's STILL got it :-(

[ramakentesh]

I remember once a doctor was examining me and tell me that "i should be feeling well' - BP normalish, HR within normal ranges, but I felt like absolute death at the time. Whereas when I got my TTT done my NE levels were quite high, my renin was very low and above all my MSNA (nerve firing rate which demonstrates symoathetic nervous system response to standing) was so high that the doctors were worried for me and wanted to stop the test. But I felt quite well at that stage!

Work that out... I remember they helped me onto a bed like an invalid.

As someone here once quoted from a doctor - the diagnosis of POTS: 'they diagnosed your symptom'

[issie]

I'm one of those that's had it since at least age 8 and I'm now 51. I've gotten worse with age, not better. But, my other issues compound the problem with the EDS and osteoarthritis and autoimmune issues that have set in with later life.

[surfgirl14]

I am 18 years old and it is a bit contraverseral what is pediatrics. I have been told 22 and some say 18?? So what would I fall into. I was diagnosed at 17 years old.

I see pediatric doctors .... pediatric cardiologist....and go to duke childrens. It would be nice to know. According to the American Academy of Pediatrics 21 years old.

[anna]

I recall having symptoms as a very young child I am now 48, my children twin sons16 year olds and a 19 year old girl, they also had issues from very young as well!!! I think the biggest problem here is that Dr.'s specialising in ANS problems understand that ANS dysfunction & POTS have many causes that as yet are not fully understood. But then you get other Dr.'s not quite as knowledgeable that want to get on the band wagon as POTS is the "in" condition!!! they tend to fly in pick up on bits of studies and through out these 1 size fits all statements!! Like POTS in children gets better with age! I do believe the criteria for POTS in children and young adults should probably have different values as children have different base lines to adults I believe!

[anna]

Here is a copy of an email from a young consultant cardiologist that took a look at my children! note the comment:

" I think there is a market for this now"

The bottom line was that there was no overt evidence of

gross abnormality. As this was just one study pre-and post

tilt I think it is very difficult to make any conclusions.

Certainly there was no paradoxical response of vascular

compliance on tilting and the HRV and sBRS responses were

more similar to reported control data rather than those

with POTS. That said the daughter's response was borderline

on her HR increase for diagnosis of POTS. She was having

very regular PVC's which made the average trend more

difficult to interpret. I think it is a good idea for her

to see Chris Mathias in London as mum mentioned as he has

a special autonomic lab. There was nothing else that I

mentioned to mum.

I think if we start looking at these patients in more

detail and I think that there is a "market" for this now,

a specialised autonomic centre and protocol is required.

Maybe something for the future.

Please let me know if there is anything else and many

apologies again,

Damien.

[issie]

So, let them get in on the"market" - the more looking into this illness of ours the better. Hopefully, some bright young doctor will be the one to figure out something we can do to improve our quality of life with this. I know, it can't be cured - but just more quality of life would be nice. Hoping that you younger ones will "outgrow" this and things will improve with age for you. But, if you - like me- seem to be born with a genetic flaw and your parents have symptoms too - it's likely that you have a life long thing to learn to deal with. Hate to state the facts - but that is how it appears to be. I've lived a very full, interesting and productive life - so it's not the end of life. You just have to learn to work around things. I travel, have held very interesting jobs and have lots of friends and purpose in my life. Don't let the illness define you - just let it be a small, annoying part of your life - not the whole picture.

[anna]

Yep, issie you are right, absolutely no need to make an illness define you, never have and never will. That is definitely some thing my children took on board with the grace and maturity of someone years their senior.

[bkweavers]

@kcmom-Dr. Grubb does have some articles out on adolescents and POTS. He knows a lot about adolescents.

Anna-my daughter has improved over the past 2 years.She was diagnosed with POTS 4 and a half years ago. The first year was horrible. This past year, we've seen huge improvements in her. She is not completely better at this point as she just had 2 weeks of feeling dizzy and tired but it went away.

I've noticed that people on this forum who have more than just autonomic issues going on, they are the ones who fare the worst and flare the most. I think there needs to be so much more research done on adolescents and adults. Doctors have just skimmed the surface of what's going on!

I would be interested to see what ages adolescents became sick and which ones fared better. Dr. Grubb told us that the adolescents he see who get sick at an earlier age, generally have a better overall prognosis. Liz became sick at age 11 so he said she had a good chance of completely getting rid of POTS.

I think at any age, this is incredibly hard. For kids and adults, it seems to teach compassion for others and strength that they didn't know they possessed. For me, I've learned so much from my daughter. She is so strong and I am so inspired by her.

Brenda

[sandymbme]

I too had symptoms young, around 17, and am still sick at 36. Like Issie I have EDS, and other factors at play. My EDS is the root cause of my POTS, and who knows how many other problems. I was blessed enough to have a long period of relative normalcy in my 20's. A fair amount of "dizzy spells" where I would get a bit woozy, but nothing as serious as what I suffer today, and I worked a series of very physical jobs. My biggest regret from that time was that I never dreamed I would relapse, mainly because there was no proper diagnosis when I was young. My doctor at the time simply recommended I stop the activity, (aerobics, go figure!) that was triggering the syncope episodes. I feel that I could have perhaps hung on to my relative health a bit longer had I taken better care of myself.

So I would say to even those who are young and on the mend, always mind your health! I don't exactly beat myself up over not doing so, but I would sleep better knowing I had done everything I could to stay as healthy as possible as long as possible. Now I do all I possibly can, and on my good days can manage most of my symptoms. But far from all.

Sandy

[kclynn]

Brenda, I know, I think I have probably read all his articles. I was refering to this study particularily. These studies are so hard to interpret anyway, unless you are privy to the initial "criteria".

[icesktr189]

I got better for 2 years after my diagnosis, but then got pregnant. That changed everything for me.. my body went downhill fast after the birth.

[anna]

Yep Me and the children have EDS as well and my children started showing signs of something not being quite right from infancy, it is difficult to tell whether their problems were EDS linked or ANS stuff going on! They have constant daily fatigue, lightheadedness, brain fog, that they just get on with, then they have bouts of not able to function!! usually when they have caught a bug, which they seem to catch a lot of really!! This has gone on since they were young and we see little improvement really my daughter will be 20 soon and my boys will be 17 in not that long.

[issie]

As a child I had constant ear and throat infections. My glands were always swollen in my neck - I had lots of colds and just seemed to be a sickly child. I had no stamina, was always falling down and spraining something. Had severe exercise intolerance as even a very young child. I'd still wrestle with the boys and run and play - but I hurt all the time even then and would nearly pass out from running or exerting myself physically. Children continue on - because well they want to.

Things got some better in my 20's - but that's when I started dealing with really bad female issues - and had a ruptured appendix that created havoc on my body - because we didn't have insurance - I didn't get the much needed operation (until 2 years later). I think EDS, autoimmune issues, possible mitochondrial issues and now MCAD issues are my causes - frankly, it all boils down to genetics. My sister has severe orthostatic issues and all her kids seem to be following in our footsteps. One child they think has POTS another OI and both have EDS. There's some things that doctors are NOT going to be able to fix.

We just have to learn what type of bandaid to put on to give us the best quality of life that is possible, develop a good attitude, accept the hand of cards we've been dealt and try to have a good - exciting and productive life. If we dwell on all the negatives all the time - we won't have that. We have to find a way to see the good and find enjoyment and happiness in every single day. Some people think there will be a "magic" pill that we will be able to take - not going to happen. I think allot to dealing with things is the attitude we develop and how realistically we look at things.

We may get 70 or 80 years of life - that's not long - especially when you hit my age, in the 50's - life flys by. Try to make the best of it and enjoy what you have. Is the sun out; is it snowing white; is your puppy there to have his head rubbed; is your child laughing and pretending to be Peter Pan; did your husband glance your way and give you a little wink; did your friend call up - just to say "HI"? It's the little things in life that we can appreciate - we just have to try. Like I said earlier - try not to let this illness define you. Don't let every conversation be about POTS and how bad you feel. Focus on the positives not the negatives. We all have plenty of negatives - - - BUT, we have plenty of positives too. Everyone, put a smile on your face - get as many little crinkles on your face as possible - not from a frown but from a smile. Keep On Keepin ON.

Issie

[anna]

Issie believe me, I agree with you whole heartedly that being positive is so much much more healthy for body and soul, than being the oh woe is me kind of person!!! Ha but I am also a practical sort of girl that will always fix what I can when it is broke!!

For example in the UK if your child does not attend school regularly and you have no reason for why they are off school, Social services can get very nasty!! From a young age my kids had bouts of being ill unable to physically move off the sofa, thus they missed time from school, sadly the school head thought I was being an unkind mother that did not want my children to have an education, so she thought it wise to call in the SS! Had I not pushed to find out what was going on with my children's health I shudder to think what might have happened to them.

Therefore while I strongly believe, that being positive and having a positive attitude in life is so very important, I also feel strongly that it is wise to be pro active and not to always take what life deals you lying down and sometimes we just have to deal with negatives!!