15 year old DD suspected PoTS

[BornToWalk]

So this has come a bit like a bolt out of the blue DD has been complaining of feeling dizzy, headaches etc for the past month or so, has fainted 3 times during that time. We managed to get a GP appointment yesterday who checked her blood pressure and heart rate on sitting and standing, with her heart rate dramatically increasing whilst standing.

Various tests have been ordered, but obviously these will take a while. Is there anything we should/shouldn't be doing in the meantime? I did ask the GP, who said to just be careful and rest if needed, but DD is quite active and is keen to try and carry on. I am trying to find the happy balance of not panicking her, but ensuring she is sensible! Any advice or tips from parents of teenagers with PoTS would be greatly appreciated thank you

Pots Uk full of good advice
Usual starter things to do are drink plenty or water and have salt. Electrolyte drinks good.
There a Facebook group Parents of people with pots Uk that is helpful

The other things that often help are compression leggings or socks as helps the blood get to upper part of the body
I got my dd a wrist band that says her conditions on it in case she faints while out hidden disabilities also do a lanyard / info card useful if somewhere need to queue like airport
She needed medication in the end but we had to see Prof Daubeney privately to get it

My DS (17) was diagnosed with POTs earlier this year (by the Long Covid clinic). He was told to increase the salt in his diet and drink more water. In January he only managed 3 minutes of the 10 minute standing test, last week he managed 5 minutes so some improvement but his heart rate still increases significantly on standing whilst his blood pressure drops.

We're in a slightly different situation that he suffers from chronic fatigue at the moment too so all exercise (apart from physio stretching) is off the cards . However I understand POTs doesn't mean you can't exercise, it just means you have to plan it better.

The sister of a good friend has it and has been a runner for many years so I live in hope of my DS getting back to his previous sporty life.

Also agree with the POTS uk website and Facebook group. Become a member of both. Such helpful information and support. And adding salt and water is what most start by doing. We use Electrolyte effervescent tablets which are great popped in a bottle of water. Nice flavours too. We use ORS ones which you can get from Amazon and often on offer at Boots.

@WhatHaveIFound that's interesting that your DS was diagnosed by the Long Covid clinic, the first thing the GP asked was if DD had had covid (she has never tested positive but we think she may have had it right at the start before the first lockdown before testing came in).

@maudesvagina DD has already realised that drinking lucozade/powerade type drinks makes her feel slightly better. Salt is a new one though (I did look up the recommended websites and see it mentioned a lot on there as well), we did think it may be blood sugar she was always carried an emergency snack which was sweet. Guess we should change that then!

@RainbowZebraWarrior I'll look up those tablets thank you, as DD is slightly worried over not being allowed drinks other than water at school.

Speaking of school, what is the best approach there? I have already mentioned the suspected diagnosis and that she has been told not to stand for prolonged periods of time, but is there anything else we should be thinking of?

Re school: I would be really specific eg she needs to add electrolyte tablets to her water x times a day; she must not stand up for more than X minutes, then she'll need to sit down for Y minutes; if she feels faint she will need...;

I was told to 'glug my drinks down in one' for best effect. I was advised to have aneElectrolyte drink eg dioralyte on waking, but when I asked why, can't I just eat breakfast? they did say that advice was more for people who don't eat breakfast straight after getting up.

We have a healthcare person at school so she collates any information regarding kids medical issues. I agree, be specific and say you're awaiting appointments (I assume tilt table tests via falls and syncope) but that you have a probable diagnosis of PoTS. I think there's something you can print off the PoTS website that details symptoms and helpful advice.

Definitely mention that the electrolyte tablets need to be added to water (they may ask you to sign something for this as it can be considered a form of medication)

Also make sure sports teachers are on board. I discussed this at length with school but it all went terribly tits up when a supply PE teacher came in and didn't know my DDs history. She was also told to get on with it as the other kids were starting to 'not want to do PE' as a result of her needing to sit out at times. I've been very much belt and braces now on this front and DD carries a letter from me which she can produce if the supply teacher issue ever come up again. But to be fair, all the staff know now. (She has EDS as well so we have pain and joint issues)

BornToWalk I forwarded the POTs leaflet that the clinic gave us to DS's HOY and asked it to be sent on to his teachers and the school nurse. It's been added to his records too.

DS only really walks between lessons and spends his study periods sitting in the 6th form centre. We drive him to/from school now, curently sharing lifts with another mum.

The biggest test will be the field trip he's due to go on during the Autumn term. 3 days on his feet and no doubt sleep deprived too but he's keen to go and I don't want him to miss out.

@WhatHaveIFound I did think about giving them a leaflet, but I worry that that may be jumping the gun a bit as there is no official diagnosis yet. DD's first fainting episode actually happened while she was away with school on a sports trip, which she was due to cut short to do her DofE expedition. We didnt think her hiking 24km over 2 days unsupervised was a great idea at that point when we had no idea what was wrong, so rather than getting the train home by herself, school allowed her to remain on the trip on reduced activities and travel home with them. Good luck to your DS for his field trip

Dd hasn't made it to school much but plan includes things like leaving class a few minutes early so didn't have to rush and fight her way through crowd

• school got special measures for exams mainly extra time so she can have rest breaks
• giving her a chair in science lab so won't fall off a stool
• she's light sensitive so is allowed to wear tinted glasses (pink tint) in class
• didn't do PE
• had reduced timetable when really bad

BornToWalk just wondering how your DD was geting on? Has she increased water & salt whilst you wait for tests? I was listening to an interesting podcast that explained that drinking more water is actually a way of increasing blood volume. It's TLC Sessions (episode 34) if you're interested.

My DS's case was reviewed by the LC clinic / cardiologist yesterday and they now want him to drink 3 litres of water/day. I'm not sure if he's capable of that!

@WhatHaveIFound had a couple more fainting episodes and a lot more dizziness. She is back at GP's tomorrow for an ecg, with a 24 hour blood pressure check the beginning of June. GP has said there is nothing they can do until all results are in, so we just have to ride it out She has upped her water and slightly increased salt - didnt want to increase it too much until medical advice said to.

Bless your DS, 3l is a lot! Hopefully he gets sorted for his field trip later in the year

Good luck to your DD with the ecg. You should get the results fairly quickly.

DS managed to faint at the hospital just after he's had one fitted for a few days of measurments. This was pre-Covid so i'm wondering if he already had PoTS at this point?

Blood tests for DS on the 27th, then Long Covid clinic & dietitian next month. All on top of Y12 exams!

A positive "living with PoTS" story here - DD started fainting when she was 13, took us two years or so to get in front of a consultant who was properly clued up, who was incredible (sadly she doesn't see Potsies any more).

Lots of water (two litres by lunchtime, try and get a "toilet pass" for school, lots of salt, exercise which works the calf muscles specifically (dancing in DDs case). Really really regular routines (mealtimes, bedtimes, study times, relaxation times). Try out the different medications, different ones work better for different people. Fludrocortisone made no difference to DD, ivabradine was OK, midodrine was the best (but difficult/impossible to get for DC).

DD managed gold DofE, both expeditions with no adjustments (earlier ones she didn't have to carry her full kit, just a day bag); she graduated a couple of years ago, manages a full time job, and a very active sport, and has just got married. Fainting now once a month or so (goes in clusters) rather than 100+ times a day

DD was lucky in that she was very sporty before she started fainting (she totally fits the Danish study profile of sporty girls who developed PoTS post HPV vaccination) and she was determined not to let it beat her, so refused to stop dancing, so never really got deconditioned, that seems to be pretty important, as its hard to get back from. She had a couple of really tight supportive friendship groups at school who were able to tell when she was about to faint and stop her banging her head (too much!), and similarly at university.

Highly recommend POTS UK and the FB group (I was one of the original members, although I just pop in every so often these days as DD is off my hands now )

@MyVisionsComeFromSoup thanks so much for your post, it gives much reassurance It's interesting you comment about your DD being sporty, DD is too, has trampolined at competition level for a good few years, only giving it up last year as her club weren't great during Covid times. SHe still does lots of conditioning work at home, so I will mention about exercising the calves.

DD has also been doing some research re DofE and has found an expedition done in canoes rather than walking - as a keen rower she is angling for that one