My daughter been diagnosed with pots

[Buckley123]

My 11 year old has been diagnosed with pots today gutted is a understatement 😭

[Hidden]

Oh no!

[Hidden]

I hope, that because you caught it young, it can be treated without getting worse? I’m sorry, I don’t know much about it, just what it is. Has she actually fainted on standing. Not good.

[Buckley123 in reply to Hidden]

Thanks no She hasn’t but her legs pool with blood when she stands still and her hands have started to itch she also started having panic attacks xx

[Hidden in reply to Buckley123]

I’m so sorry. Too young to have to deal and worry about this. I’m sorry for you too. I know that as moms, we love our kids so much and anything that hurts them, hurts us.

[Apricot100 in reply to Hidden]

This ⬆️. Sending much love and strength to you both xxx

[Buckley123 in reply to Apricot100]

Thanks xxx

[Buckley123 in reply to Hidden]

Thanks xx

[honeybug]

Ohhhhhhh no Buckley!!! 😳

Love hugs kisses and prayers to you both.

EJ😊🌿🌸🦋🙏🤗💗🥰😇🕊

[Buckley123 in reply to honeybug]

Thanks ❤️ xxx

[honeybug in reply to Buckley123]

Welcome sweetie. xxx

[Hidden]

Oh no I’m sorry Jade - hugs x

[Buckley123 in reply to Hidden]

Thanks xx ❤️❤️❤️

[NeuronerdDoaty]

I’m so sorry. Luckily this can be worked on as a young teen. It’s scary when your children get any diagnosis.

Sending prayers, love, and peace to all of you.

Doaty💛

[Buckley123 in reply to NeuronerdDoaty]

Thanks doaty ❤️❤️

[Roarah]

I am so sorry, Jade. Good news is that unlike adults who acquire POtS, 80 percent of diagnosed teens outgrow their symptoms. I am hoping your dear daughter is in that 80%. Xo

[Buckley123 in reply to Roarah]

Thanks Sounds reassuring ❤️❤️

[Freckle1000 in reply to Buckley123]

I have POTs myself and read the same information on teenage rehab rates.

A medical physiologist and some very specific rehab excercises helped me as mine was (in part at least ) due to physical de - conditioning - along with other sundry stuff.

At first I couldn't stand up without nearly flaking out, pale - headaches etc. Now I'm graduating to vertical excercises. small jogs etc. The pots still there - but I'd describe it as more of a mild bother than a disability now. I can function quite easily. The tachycardia can feel distressing - and can lead to panic. Physiologically It feels like a panic attack without having one.

If you want some info on the excercises - give me a buzz.

Also - can't drink cafeene or alcohol with this one.

One of my first rehab things was to just sit in a vertical chair with both feet flat on the ground. It felt horrible - but it restored one of the misfiring BP reflexes.

[Goldyukr in reply to Freckle1000]

Freckle, i would be interested in knowing about your exercise routine. I have POTS and the leg pain is horrible.

[Freckle1000 in reply to Goldyukr]

Hi Goldyukr,

I've been meaning to reply - having some internet problems at my end.

🙃 I'll answer soon.

[Freckle1000 in reply to Goldyukr]

Hello Again.

Its hard to verbalize what I do - but I'll have a go. I have to use a gym - but a bit of creativity at home would probably just as good. When I first started - it was in this in this order:

You might have to google a lot of what I'm talking about. Hope it makes some sense.

Done Every Second Day:

One day at Gym - the other day try and go for a walk.

……….………...…………………...

4. Mins on rowing machine (or any gentle cardio you can tolerate)

10 x 2 on a: Leg press/Calf raise exercise machine (with a seat so you don't have to stand) - whatever weight you can tolerate - Don't be ambitious at first. Doing the leg press movement slowly without the weights touching the un - used lower weights as the machine lowers them. ie: smooth non stop exercise. (essentially anything gentle that will build muscles in the legs)

10 x 2…….not sure what the machine is called, but its much like a seated chest press machine - except instead of pushing the weight forward - you pull the weight inwards toward your chest. - Same as above - on a seat - but with feet flat on the ground, strait back, looking forward - done slowly - not letting the weights touch the lower ones ( like above ) ( again - anything that will build up the muscles in you're arms - that you can tolerate )

20 Step Ups - (essentially stepping up and down a stair) alternate the leading foot right to left - every 10 steps. (over time you can carry weights in hand - and make the step up - higher)

4. Mins on rowing machine.

10 x 2 Squats: But done from a chair, both feet flat on the ground - looking forward keeping you're back as strait as possible - and with you're arms crossed on you're chest. As you get better at it - the lower you can squat.

(If this is too much at first - you could try 'wall sitting' - with a large inflatable gym ball at you're back) I did this at first.

When I spoke to a (gastroenterologist) who was interested in the topic - he claimed that the step ups and squats where probably the most important. (and sitting with both feet on the floor in a vertical chair) But theoretically - building up the muscle tone of the arms and legs would be a far healthier option than resorting to tight stockings to try and stop the blood pooling. And you don't need much work at all to build up some muscle. I was amazed at how easy it was.

I've essentially stuck with this routine - but jut increased everything as I went along.

At first I thought they were trying to kill me - it was utterly anti - intuitive I was sure the idea was absolutely wrong. I spent a lot of my time at the gym on my back with my legs in the air in between exercises - but my stubborn GP refused to prescribe any of the medications for POTs - and insisted I stick with the exercises for a certain period until he'd relent with a script. - a hate -love - hate, hate - appreciate relationship there.

While my heart rate and BP's are still a little off and all over the place - they're not 'WAY' off like they were - and when I stand - unless I'm really buggered, I don't have a BP dip any more. However - I've learnt to do the exercises as near to the end of the day as possible - because - depending on what my autonomic system is up to - its easy to push myself too far and end up pale, with a headache and - day long brain fog. I still have the tachycardia - ( though not as bad as it was ) so I stay aware of my heart rate - sometimes take my pulse ) learnt to be very aware when I need to just stop. When I first started I did have two bouts of scary chest pain - and thought I was having a heart attack - bit disconcerting, but I was a bit like that at the time anyway.

I have weird pain in the right leg - right side of my head (?) worse when I lie down. autonomic vascular stuff...……? I'm assuming...….?

Its still extremely anti - intuitive to go the gym - but Its worked for me. I went away for a week - with just walking etc. but the BP started to drop out again. I've learnt that I literally have to do these exercises stay vertical and feel well.

Again - hoping this made some sense.

I hope this stuff can bring you some relief from the horrible grind.

X

[Freckle1000 in reply to Freckle1000]

........I also had the luxury of a medical physiologist checking my BP and Heart rates while in ( vertical ) movement before I properly started.

[Goldyukr in reply to Freckle1000]

Wow how incredibly helpful! Thank you for taking the time to type that all out. Yes it does make sense. I’m in PT right now so I’ll ask my therapist about it. Thank you again.

[Salzer]

Aw no, Jade. Sending you both big hugs. It's so hard to see our kids struggle with illness. Just feels so unfair. But she's got a great mum by her side fighting for her x

[Buckley123 in reply to Salzer]

Thanks so much for your support I really appreciate it ❤️❤️

[jimbo1605]

Both my son, daughter and wife have PoTs.

Get referred to a cardiologist who knows about Pots (pots uk will be able to advise you)

standard advice is to drink loads, lots of salt and step up exercise - but please talk to medic before starting this.

Pots commonly but not always goes with other problems such as CFS or lupus - does he/she have anything else ?

[Buckley123 in reply to jimbo1605]

What’s cfs? No not yet that we know of just hyper mobility x

[jimbo1605]

CFs is chronic fatigue syndrome otherwise known as ME. The other thing it goes with is EDS / Hyper mob

My daughter has EDS - has it been diagnosed by a rheumy ?

Pots tends to occur because of genetics (this point is under debate my medics) and incapacity or lack of mobility - hence it tends to accompany other stuff. I have been advised by a Pots consultant quite often the best way of addressing it is to deal with the original illness that causes the lack of movement.

In addition a cardio can prescribe lots of drugs to help the movement of the blood around the body (fluodrohydrocotisone, midodrine, bets blockers etc.

Pots uk have a great web site well worth a look.

[Buckley123 in reply to jimbo1605]

Thanks I really appreciate your help what about 80% children grow out of it is this true xx

[jimbo1605 in reply to Buckley123]

I dont know about the recovery rates without treatment. I suggest if it is having a material impact on normal life seek a referral and get treated. Pots at is worst can include fatigue, muscle weakness, heart problems, migraine, digestive issues, disorientation, brain fog, vision issues + ++ at its best its just feeling a bit dizzy.

[Freckle1000 in reply to jimbo1605]

Hello Jimbo.

I have POTs in some part due to deconditioning from long illness - the other part from Lupus. ( I know it's contraversial ) but a gentle excercise regimen from a medical physiologist helped get me vertical and going again.

One obscure excercise they started me off on was to sit vertically in a comfortable chair with both feet flat on the ground whenever I needed to rest. It felt 'orrid and was my least favourite thing to do - but it helped restore a specific BP reflex.

The excercises where - and still are very counter intuitive - but it's worked to fix the problem to great extent. I still have POTs - but I'm functional. No flaking out, and recently - reduced BP drop. Some good days - no drop.

If I miss doing a set for more than a 3-4 days I'm back on the couch.

As you said - it's important to determine why POTs has occurred from a Doc. before doing anything.

[Lisalou19]

Testing times 😔. I do hope she’s able to live a normal, productive life. Medicine has evolved so much which is one blessing .

How does she feel in herself? X

[Buckley123 in reply to Lisalou19]

She doesn’t no I sent her out I feel her anxiety is to high given me and my mum I don’t want her to think she’s heading the same way xx

[Lisalou19 in reply to Buckley123]

😬. How will they treat her if she doesn’t know? Anxiety is a bi**h and can be passed on and we don’t mean it too 😟

X

[Buckley123 in reply to Lisalou19]

I’m hoping with life style changes it can be managed if not then I will have to tell her xx

[Lisalou19 in reply to Buckley123]

I worry there is something wrong with my youngest daughter, she gets what I’d class as a classic butterfly rash but because she doesn’t moan about anything in particular I don’t highlight it.

If she can manage with just like style changes then that’s brilliant xx

[Buckley123 in reply to Lisalou19]

I hope so xxx

[MEGS53]

Hi. So sorry to hear about your daughter. It's another worry that you just don't need. From my reading, it's much easier to treat - successfully - a young person with this illness. We all worry about our children, (my daughter's 34 and I still worry about her), I particularly worry that my condition has some genetic components and I've passed 'bad genes' on to her. There's really no way of knowing this as most illnesses are a very complex mixture of genetics and environmental factors. Stay strong. xxx

[Wendy39]

I’m really sorry to hear this. 11. Poor girl. What a worry.

Does she understand it herself?

My sister was diagnosed with EDS and POTS last year but my knowledge of it isn’t good, I confess.

And 2 of my children have me worried about their Heath with certain autoimmune symptoms over the last 3 years.

I’m sure a lot of mums here can relate.

Sending you a hug. Take each day at a time is all any of us can do really.

xx

[KayHimm]

Jade, I know this is upsetting and particularly tough as you go through your own losses. POTS can be managed pretty well in many cases.

How did they diagnose her? Tilt table test? Is cardiology treating her or neurology? There is a lot that can be done. Happy to help to tell you my own experience. I have autonomic dysfunction. My heart rate goes down, not up, as in POTS. A lot of the lifestyle adaptations are the same.

If they put her on a high salt diet, you might want to try the new coated salt tablets. How is she functioning?

Xk