Does anybody have PoTS? really need help.

[ariane5]

Dd1 (11) has postural orthostatic tachycardia syndrome. She also has EDS and pectus excavatum.

Pots is causing her severe problems lately and she nearly fainted a few times today. Her genetic consultant wrote to gp requesting that they refer her to a specialist but they have refused as want to see her themselves first and seem reluctant. Genetic dr told us to up dd fluid and salt intake which we have but it is not helping.

I do not know much about pots to be honest, dd gets dizzy and faint if she gets up too quicl or if stands for long periods. The hot weather seems to be making things worse and she slept for an hour after school today then woke up complaining of feeling floaty and like she would faint.

Does anybody else have pots? What should I be asking gp/consultant to do to help? Is there medication for this that is helpful?

Just seen your post. I have pots and vasovagal syncope. I'm 47 and have only just been diagnosed! I had to go through an extremely rude and unhelpful GP first before I got to see a specialist nurse at my local hospital for tests. i now take a drug called Midrodine which is only prescribed by the hospital, and this increases my bp. So far so good. The weather does not help, increase salt and fluids is the advice in any weather, but pots gets worse in the heat. I take a rehydrating capsule called Nuun which is very good, buy it off Amazon, check first if ok for kids. Somewhere I've seen a letter you can take to a GP explaining PoTs a little more and asking for a referral, I'll dig around and see if I can send it to you, trust me, I understand how hard it is to get a referral!

Thankyou, I think the heat def affects dd1. She cannot even have too warm baths in winter as it makes her feel faint so I'm sure the weather is making things worse.

Poor thing just wants to lie down and sleep all the time, we saw her physio today who advised some leg exercises to do before getting up from sitting so hope that will help.

hi I have an 11 year old with pots snd eds along with a few other problems ...I am out doing the school pick up but will post again later.

I was told to do calf squeezes before getting up. It has helped me.