Tachycardia / PoTS in teenager - advice?

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Our 13 year old daughter is currently being investigated for PoTS. Her heart rate never goes below 100bpm, she feels dizzy every time she stands up, gets breathless just coming downstairs to talk to us, can’t do PE without feeling like she’s going to pass out etc. Yesterday her school called me and said she was in first aid as her arms “weren’t working”. Immediately I’m like “call a da*n ambulance?!” but apparently she meant they felt heavy and she couldn’t really lift them. I took her to A&E, she was straight in, ECGs etc. Her heart rate went from 106 to 46 to 167 bpm just on the short ECG they did. They did well to keep her calm, I was calm too and we were just chatting about something she had watched recently on Netflix beforehand. They immediately diagnosed her with tachycardia and said that she needs to be seen by the paediatric cardiologist as a matter of urgency and her referral has been expedited.

She wears a Fitbit at all times anyway just for the time but now it is really telling for her heart rate. I’m not trying to make it a big deal for her as I don’t want her to worry as that will increase her heart rate.
I’ve looked at the foods we eat, the drinks we have, seeing what is in everything to see what could increase / decrease her rate. She has a very good diet anyway, always has her 5 a day, usually 10, has a home cooked meal with lots of green veg every night as she loves them, drinks plenty of squash (won’t drink water on its own) and does have treats but not excessively (chocolate, cake etc).

My partner (her dad) is very good with the none serious stuff, and I’m the one who deals with the serious stuff, is just how we’ve always been. He understands obviously what’s going on, but takes a light hearted view around her to keep her calm (says she has ‘telekinesis’ not tachycardia for example, and jokes she’s going to start doing an Eleven from Stranger Things, she finds it hilarious).

Is there anybody else who has a child with tachycardia who can advise on what happens going forward? Or any advice at all in general on day to day life? I feel like I’m constantly telling her to ‘take a second’ and I just wish I could take it all away.

My daughter had a few episodes of a very high heart rate and later on a heart defect was picked up.
If she is being referred to cardiologist they should do an echo and possibly a holter monitor or a Zio Patch, my daughter had a 24 hour holter than a 7 day Zio Patch.

Young adult dc diagnosed as 18 yo. It can be debilitating, but isn’t life threatening at all and can be managed without too much difficulty. Beta blockers should help, as should extra salt in her diet. Swimming for exercise as it’s a flat position rather than something upright. https://www.potsuk.org/about-pots/diagnosis/

My sister has had it since she was 14. Took them till she was 23 to diagnose it. (She’s in her 40s now and had to fight to get a diagnosis.)

She had various medications and was on a number of clinical trials but now manages it with diet and medication. She spent 15 years working 12 hour shifts with the police (civilian) so you can love a reasonably normal life with it, as long as you are careful.

I'm not a teenager but am diagnosed with pots. I don't have tachycardia like your daughter though. My heart rate just increases when I stand, my resting heart rate is quite low.

Generic things you can do now to see if they help are give your daughter electrolytes, these ones are formulated for pots. https://xmiles.co.uk/en-ie/products/saltstick-vitassium-100-capsules

Wearing compression socks, waist or thigh high can help with blood pooling.

Once diagnosed there are a range of medications she can try that might be successful. For me diagnosis involved an echo, a treadmill test, stand up sit down test and a 2 or 3 day holter monitor.

And yes, salt on EVERYTHING.

Ask for a tilt test (usually done after a cardiology referral). a positive tilt test can show POTS.

in the mean time a salty diet and keeping well hydrated helps. There are some exercises on the pots website that can be really useful.

I have tachycardia and just wanted to provide some reassurance that while any heart issue sounds scary it unlikely to be anything to worry about. She needs an ECG, probably holter monitor 24hr, and echocardiogram. I've had all of these, and also tilt table test. They found sinus tachycardia and trigeminy (triple ectopic beats). I also have a heart murmur.

I felt immediately better when put on low dose beta blockers. I also used to wear compression socks but having started doing more cardio and weight training at the gym I don't need these any more. I need to drink a lot, take electrolytes and salt. Need to be careful standing up to long and eating anything sugary without fat/protein increases symptoms.

So while it is very scary to experience (and uncomfortable) my cardiologist keeps emphasising to me that my condition isn't dangerous or life shortening. It's just something I need to keep in mind eg just making sure I don't get dehydrated.

Hopefully once she's had the tests they can rule out anything more worrying and it will just be something that she needs to keep an eye on.

Is she slim and/or has low blood pressure? I am slim with very low blood pressure and my cardiologist says tachycardia/POTS is much more common in slim girls/women.

Thank you everybody for the replies ❤️ I am feeling so overwhelmed for her at the moment and trying to keep her nice and calm but at the same time also trying to tell her that her health is important (how many 13 year olds love being lectured on their health?!).

She has always been a really slim girl, since birth. She was technically born a ‘low weight’ (6lb 13oz which I thought was okay) and she has her dads metabolism where she could probably eat everything in the house and not gain a single pound.
Ive not heard of these other tests yet but as she hasn’t been seen by cardiologists I’m assuming that will be why. She knows she’s going to be tested more and that she may have to take medication.

On a Sunday when she goes to her nans for Sunday lunch, she is allowed to drink Pepsi Max. Obviously now I’ve said no more, it has caffeine, cut it out immediately, and she’s acting like I’ve taken the one thing from her life that she loves away from her.
She loves mint sauce with most of her meals but I think that has more sugar than salt, she likes salt anyway so that will be no problem adding more.

Has there been a major overhaul in diet for anybody else’s child or just addition to it?

Kind of related too, we are booked to go to Greece in the summer and our current travel insurance doesn’t have this listed as a confirmed diagnosis for her, just under investigation for PoTS. Goes without saying I now need to update the provider to confirm she has a diagnosis of tachycardia? She has flown a lot in the past but obviously insurance is an essential.

Also, has anybody applied for DLA for their child for this condition?
She hasn’t been back to school since as her dizziness, blood pressure and headaches have been overwhelming her and she’s been exhausted. I’m wondering if I’d be able to get a blue badge for her?