Poorly teenager for 10 months Should I find second opinion?

[PENYPARC]

My 14 year old has been suffering from headaches, dizziness and occasional chest pain since having a nasty viral infection in February. We’ve had lots of doctors visits and lots of hospital visits through A&E and all they’ve done is blood test (lots of them) which showed nothing. Lots of ECGs which showed Bradycardia which they would expect in a fit boy but he isn’t anymore he went from athletics twice a week, football, cadets and after school activities, in school all day everyday to a child that struggles to manage whole days due to the headaches and dizziness. All we get from doctors is it’s probably just viral and nothing serious but has started to have some times when he has passed out whilst doing activities. I just don’t know what to do the doctors make me feel like I’m stupid and I’m wasting their time but he’s not the happy energetic boy he was and I hate seeing him in pain with his head everyday but making himself go to school even though he’s sent home because he’s to bad by dinner but he says he has to try. He now saying although he’s not well there’s no point going to see doctors because they’re not making him better just taking bloods but 5bats not showing anything. Any help/advice great fully received xx

Pots?

I was going to suggest checking him for anaemia but I can see you’ve already had bloods done. My now seven year old had horrendous post viral fatigue for over a year after catching a nasty respiratory infection during his time in reception… it was like having a different child, he was so tired he kept falling asleep in class, he literally couldn’t make it through a whole day.He was so zoned out and lethargisc. He started mixing up his words and would look faint if he had to go upstairs or carry anything - he also (and this is a bit weird) started mixing up his dominant hand - it was like he was living in someone else’s body at times. Because it was his first year at school his teachers wondered if he had some form of special needs and didn’t believe me when I said this is literally not my child. Thankfully we are finally turning a corner but it’s now almost two years exactly and we’ve had to go through elimination diets, stacks of vitamins, managing his energy, rest days in bed over weekends etc just to get him through it and we still ended up back in hospital again a few months ago as his oxygen levels plummeted during a heavy cold… he still looks pale but his energy levels are pretty much there now… sorry for going on but post viral is a long road sometimes and it’s hard for people to understand when they are young as generally they bounce back from most things. I would look up chronic fatigue syndrome as that explained a lot of my child’s symptoms. I hope this helps - I would definitely keep pursuing answers. My child is now under a consultant paediatrician who is determined to work out what’s happening.

I’m thinking POTS too.

Is his DF around? One thing that's always made the GP listen is taking DH along. GOs seem really quick to dismiss Women or DC but as soon as Dad turns up they take things seriously.

Don't want to upset any GOs in here. This has just been our experience when the DC have been quite unwell.

Thirding PoTS - post viral
dr Gall at Kings college hospital London is excellent

Has he had an MRI done? After a year of being fobbed off and treated like I was a totally paranoid mother my son needed emergency brain surgery which pretty much fixed everything. Obviously 99.99% of the time headaches aren't caused by something sinister, but when they're recurrent it's honestly worth pushing as hard as you can for them to rule out another cause. Being your child's only advocate is absolutely exhausting and I am a shell of the woman I once was, the NHS has literally broken me by just not listening over and over again, and I absolutely second getting a man to come with you to appointments (it is so wrong that you have to wheel one out to be taken seriously but that's the unfortunate reality).

POTS?

That's so tough on your poor son. Sorry you guys are being fobbed off. You need to find someone who will take this seriously. Have a look at long covid kids website or Twitter forum and POTS - they may be able to offer some guidance/doctors/tests to ask for.

Pushing through with post viral conditions may not be helpful. Maybe he should try and cut his hours down at school (speaking from bitter experience).

What's POTS?

www.potsuk.org

Dad is around it does make sense maybe if other parent starts telling them as well Thanks

Thanks for your help he has had a clear head MRI. But had a phone call and have been asked to return to Childress ward for more tests tomorrow regarding abnormal salt levels in his urine. I will be asking them about PoTS whilst on the ward and making Dad come with us as well

https://www.nhs.uk/conditions/covid-19/long-term-effects-of-covid-19-long-covid/

Have a look at the symptoms, did you test for COVID at the time?

I have POTS post-Covid (and Long Covid) and some of my symptoms were/are similar, headaches, dizziness, unable to stand doing activities without almost passing out.

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Addison's disease is a possibility. Any autoimmune conditions in the family?

I work in long covid and I suspect he has long Covid and related pots op

Post viral fatigue sounds likely.

In similar circumstances my DD was able to access a CFS/ME specialist service and was seen by them - would your GP refer?

Thank you. He’s been tested for covid every time we’ve seen GP and in the hospital and negative every time

Will ask about CFS/ME as well. thanks es in his GCSE years now so will try and get them to check as many things as possible now so we can hopefully get some answers

He likely wouldn't have been positive by the time they tested him. Also I do know someone who developed POTS after influenza infection so it could be another post-viral illness. You don't need to have had a positive COVID test to access Long Covid services BTW so GP could still refer to your local clinic.

My DS had it after glandular fever - other viruses are available

Definitely there are many viral (and non-viral) triggers for dysautonomia and energy limiting conditions, I previously had CFS/ME post-glandular fever (EBV infection), but not POTS at that time. A lot of the fatigue management advice is the same, unfortunately both CFS/ME services and Long Covid services have long waiting times.

POTS UK is a good website for management advice in the meantime.

https://www.potsuk.org/

Things that really helped me were sports compression socks/compression tights (25-35mmHg), increasing fluid intake, increasing salt intake (under specialist advice), wearing an abdominal compression binder after eating, sitting with legs up after eating, not standing still for long periods and using the counter moves on the POTS UK website for preventing fainting. Some people benefit from medication, but GP's are unlikely to prescribe for under 18's so this would need a cardiology referral if non-pharmaceutical management techniques aren't effective.