Looking For Some Further Advice/Reassurance

[flower]

Hello everybody,

I am just writing with a few further questions... in less than a week we go to see the G.P about my daughter's symptoms. She is 8 years old. I've been diagnosed with severe P.O.T.S myself (I'm 29) but had O.I symptoms since I was younger than my girl is now.

Today I did a quick check of my daughter's stats again before we go to the doc. The results were:

Sitting:

B.P 93/54

Heart Rate: 83

Standing 1 minute:

B.P 90/48

Heart Rate: 120 (+37 bpm from sitting)

Standing 3 minutes:

B.P 98/66

Heart Rate: 128 (+45 bpm from sitting)

At this point my daughter said her feet were itchy, she felt very hot in the face & nauseous. She really wanted to sit down. Her feet had turned the usual purply/red with yellowy blotches.

It has warmed up even more here in NZ now, and I am struggling a lot with symptoms. Had a severe 'attack' on Sunday. My girl seems to be pretty-much the same as the other 'test' I did to check on her, which is good news - she is however not going out in the direct sun, and spending her days around the house in only her underwear.

Basically, I am prepared for the G.P to say not to worry about this. *Very* little is known here in N.Z about POTS. My husband thinks our girl should go straight to have the TTT which I am apprehensive about. I think it would be very scary for my daughter.

So, here are some questions:

1) Do children even take tilt table tests - as in, are they even a helpful thing to do with children who are only 8 years old?

2) Is this kind of thing possibly normal for a child (the purply/red feet with yellow blotches and the heart rate issue etc)? I know when my husband stands up his heart rate only increases by 10 beats per minute, and his feet do not change colour - but I don't know if it's different for children.

3) If the doctor says not to worry, do you think it's reasonable to let the issue go, because my daughter only has difficulty with some things at school (running, standing - especially out in the sun, doing 'jump jam' aerobics where there's arm lifting etc)

I guess I want to be mentally prepared for the GP appointment, and because I know there are some people on here with children who are diagnosed with POTS - I'm just seeking some advice about what's 'normal' and what is not. I guess it's also hard for me to imagine what 'normal' is because I don't think I've ever felt it myself. I don't want to let my daughter down if she's in need of help, but I also don't want to push an issue that shouldn't be pushed.

Thank you in advance. If anybody could let me know the path that was taken to check if their child had POTS, it would be much appreciated as well.

[firewatcher]

try one of these docs:

Pediatr Res. 2008 Feb;63(2):196-202.

A matched case control study of orthostatic intolerance in children/adolescents with chronic fatigue syndrome.

Galland BC, Jackson PM, Sayers RM, Taylor BJ.

Department of Women's & Children's Health, University of Otago, Dunedin 9015, New Zealand. barbara.galland@otago.ac.nz

Abstract

This study aimed to define cardiovascular and heart rate variability (HRV) changes following head-up tilt (HUT) in children/adolescents with chronic fatigue syndrome (CFS) in comparison to age- and gender-matched controls. Twenty-six children/adolescents with CFS (11-19 y) and controls underwent 70-degree HUT for a maximum of 30 min, but returned to horizontal earlier at the participant's request with symptoms of orthostatic intolerance (OI) that included lightheadedness. Using electrocardiography and beat-beat finger blood pressure, a positive tilt was defined as OI with 1) neurally mediated hypotension (NMH); bradycardia (HR <75% of baseline), and hypotension [systolic pressure (SysP) drops >25 mm Hg)] or 2) postural orthostatic tachycardia syndrome (POTS); HR increase >30 bpm, or HR >120 bpm (with/without hypotension). Thirteen CFS and five controls exhibited OI generating a sensitivity and specificity for HUT of 50.0% and 80.8%, respectively. POTS without hypotension occurred in seven CFS subjects but no controls. POTS with hypotension and NMH occurred in both. Predominant sympathetic components to HRV on HUT were measured in CFS tilt-positive subjects. In conclusion, CFS subjects were more susceptible to OI than controls, the cardiovascular response predominantly manifest as POTS without hypotension, a response unique to CFS suggesting further investigation is warranted with respect to the pathophysiologic mechanisms involved.

PMID: 18091356

[jesse1919]

Well, it's not normal but don't get carried away. Any doc that sees a kid that feels like garbage and has a 128 pulse simply by standing should take it seriously. But you don't start with a TTT. They should do an ECG. Most offices have them. And then standard blood test (make sure they lie her flat not sitting), urine, listen carefully to her heart, maybe chest X-ray. THEN depending on what those show you can move on to a cardiologist who should do an echocardiogram and THEN a TTT. Yes she technically meets the 30 bpm rise definition of POTS and this is abnormal even for kids, but you need to go one step at a time.

Take care.

[roxie]

Hi flower, I'm sorry your daughter is having problems. It very much sounds like POTS. There is a NZ dr listed on the physician list page. He is in Christchurch. Would it be possible for you to travel to him? That may be the best bet.

I believe it is possible for a child so young to have POTS. I got it when I was 12 but there were times I saw purple in my hands & knees years before that. I never knew any different.

When I was diagnosed I didn't have a tilt table I had a machine that took my bp laying, sitting, & standing so it is possible to do it without a TTT

I hope you are able to get her some treatment

[crowebirds]

Hi flower,

{{{Hugs}}} I hate that anyone has to go through this condition. There is one silver lining. Your daughter is blessed that she has a mother that will understand what she is going through and will be able to help her to adjust to her environment and her symptoms. Yes, children can have this condition, my daughter does. TLC has had this condition since she was born. Blue legs was the first sign. Every time someone held her upright her legs would turn very blue. It wasn't until she was eight that we realized something else was going on, unfortunately it was Urticaria (hives)that became the squeaky wheal. It wasn't until this last year, at 12 years old, that we found out she had pots.

Unfortunately, at your daughters age, her high pulse rate is quite normal for a child her age. This is one thing that kept my daughter from being diagnosed early on. I would talk to your doctor and see if (s)/he has any recommendations for a physician for your daughter or a facility for testing.

Robin

[flower]

Thank you all very much for your responses :-)

I appreciate the link and description of things that should be done for diagnosis.

Sorry to read you have been unwell with POTS for so long bananas, and sorry for your daughter too Robin *hugs* I'm glad your daughter was finally diagnosed, even though it took a long time.

I am pleased to read that what's happening to my daughter might be normal in a way, because of her age. Perhaps my girl will outgrow whatever is going on. I suppose if it's going to get worse like my problems have, there's not too much that can be done about it anyway. Just got to make sure she isn't mistreated by teachers at school or anything if she can't do certain things.

Seeing the doctor in a few days. I'll come back to let you know what the doc. said :-)

Take good care and thanks again!

[flower]

Hello everybody,

I've come back to let you know what happened at the doc. appointment. Sorry it took so long - my computer has been broken for weeks & weeks.

Basically, the doctor checked my girl's b.p. laying and then standing for a minute. Feet didn't have time to change colour or anything. The doc. said she seems normal for her age and lots of kids don't like sport etc.

That's fair enough. The doctor did say if it gets worse/carries on, because it's such a complicated matter, my daughter will have to be referred to a paediatric cardiologist.

So, at this point, I'm just keeping my fingers crossed my girl outgrows whatever is happening. :-) She has a female teacher this year, who might be more understanding if my girl can't do certain 'sporty' things... so, I'm leaving the matter at the moment (I don't want to encourage my girl to think she's 'sick'. It's a bit of a tightrope!) but if my daughter tells me she's gotten in trouble during sport, I will contact the teacher without my girl's knowledge and tell her about the issue.

So, that is what happened. I'll let you know of any updates. Hopefully I can let you know at the end of the year that my girl has stopped having the problems! I'm not going to bury my head in the sand though, don't worry.

Take good care everybody :-)

[crowebirds]

Unlike facebook, we don't have a like button that we can hit. But, I am happy for you. You have a perspective on your daughter's condition that I don't have. You have lived it. This will make her journey much easier. God bless on your journey!