Concerned about daughter *in A&E*

[Unsure1899]

Really worried about daughter.

She’s 15 for context. Woke me up about 2am- excruciating pain in middle of chest- really tearful saying her chest hurts more when she lays down or tries to take a deep breath. Gave OTC painkillers- tried distraction etc. Sat downstairs to see if painkillers helped. They didn’t. At 4am I brought her to A&E as she was beside herself in pain.
Triaged in Peads V quickly, ECG fine. Obs normal. Awaiting X-ray but I’ve asked if this could be linked to starting contraceptive pill a month ago (progesterone only). Doctor has pulled a face and he’s said it’s unlikely. No blood tests at this point, I’m worried that she potentially has a blood clot due to pain and where it is. I’m not great at being strong and firm but feel like this X-ray will come back clear and we will be sent home with muscular pain!l

Should I push further?

I'm no Dr but this is something I've experienced. I had chest pains quite bad before. Usually if it hurts more when breathing in it's musculoskeletal which is like wear and tear basically usually gets better on it's own so I've been told. I've been tested for blood clots myself they usually do an ultrasound and xray but if she had blood clots I imagine she may be out of breath still worth pushing to get this checked she may just have to say she's breathless so they do the full tests as they aren't so keen on just checking these days. Best to see the GP rather than A&E tbh unless she genuinely does have breathing problems only talking from my own experience again I'm not medically trained but I hope this helps x

If she's lost weight quickly I'd put money on it being gallstones. Both me and hubby suffered after weight loss. Mine was a decade ago and it was whipped out, his is recent and he's managing the symptoms for now. It's triggered by greasy fatty/higher than normally used to fat content foods. Ask for an ultrasound to check for gallstones/sludge. I had sludge that was barely detectable on tests but when a stone got lodged I turned yellow like a Simpsons extra! The pain is so bad, I thought I was having a heart attack and dying. It's worse that having babies so I really feel for her if it is that.

I'd also be getting the pill changed for something different!

She might have a potassium deficiency, especially if ARFID. That might explain the chest pain. I really hope all goes well.

Whilst it doesn’t sound like muscular pain I’m this case from the OP (just started reading through so not checked for an update), I can assure you muscular pain can wake you up. Lucky you if you’ve never experienced this. I have a rotator cuff I just at the minute and it wakes me in agony multiple times most nights.

If you have an injury then yes absolutely. But it would be exceedingly unusual to go to bed with no problem and then develop such bad muscular pain in the middle of the night that you’re sobbing in pain.
🤷🏻‍♀️

No - but that’s not what you said, so I was clarifying. That said I’ve woken in agonising muscular pain with no idea I had an injury, so it’s not out of the realms of possibility, and ousters have said they or relatives had similar to OP’s dd and it was muscular !

Well I was answering a specific poster and scenario. And writing quickly to get points over in potentially an urgent situation..Not writing a textbook on the nuances of muscular pain. Context is everything.

No insist they check her d dimer levels. They have sent me out a few times with blood clots. Only to be rushed back in. I'm now on blood thinners long term. It's not worth the risk.

Will she drink milk?? It lines the stomach, and neutralises acid. Or maybe heartburn tablets? They are a bit chalky but you can get some in Morrisons that are orange flavoured

Have you ruled out Gallbladder? That would wake me up in the night and can be in odd places (the pain)

Gaviscon plain tablets or mint, can't tolerate it any otherway and the sachets are uck..uck ew..

Unsure: I'm glad others have already raised it. I've had costochondritis several times and it was so excruciating the first time I thought I was having a heart attack. No specific test at A&E besides ruling out other serious acute problems. As another posted said, it's very common in ADHD/Autistic people who are more likely to be hypermobile. My daughter has ADHD, is hypermobile and, during lockdown, had ARFID which is also v common for ADHD/autistic people, but the links between all of those are not well known by GP, CAMHS or Paediatric A&E. I educated myself about it and agree with a pp that while your daughter's restricted diet will be lacking in balanced nutrition due to ARFID you must insist on GP and A&E always checking her Potassium levels as my daughters went dangerously low which can cause heart failure so she was regularly monitored until it improved. Pumpkin, mango, sweet potato all helpful if she can tolerate. Happy to chat privately if helpful. Good luck! It's a tough road when so few understand ARFID. xx

Yes, ask for a d - dimer test which, if there's a clot, will show high levels of protein fragments that have broken off. I had a pulmonary embolism in 2009. I had seen two doctors who each gave a wrong diagnosis. When I went back to my GP she done a d - dimer test and after listening to my lungs sent me immediately to hospital. I was given clexane in my stomach (blood thinner) then I had a chest x- ray and ultrasound to find the dvt. (calf) The pain was awful, very sharp when breathing in. 2 further dvt's later I was found to have Factor v lieden, a blood clotting disorder where my blood is thicker then usual. I'm on blood thinners for life.

I hope your Daughter is ok- keep us informed 🙂

It sounds like pericarditis. At least that's how I felt with it. My ECG was normal. It only showed up in a CT scan.

@MamaButterfly There isn't an established body of proof to the point that you can reasonably claim so confidently that neurodiversity and hypermobility are linked. It's still an emerging topic of study with some early evidence, rather than being a settled fact. The conditions are diagnosed totally independently of each other, which reflects the current state of the evidence for any possible link.

Haven't read all the comments, but sounds like gallstones?

Please look into Ehlers-Danlos Syndrome, it has strong links with ND and the fact you say you're both short is a strong indicator too. I have pain like this in my chest regularly and it's from my breast bone shifting in my sleep when I move around. Her arfid could also potentially be being made worse by her throat not being properly in place. Have her sip a drink with her head turned to the side when her swallowing is difficult and if she finds this way of drinking easier, then that is a strong sign.

@cannockcandy Ehlers Danlos Syndrome does not have "strong links" with neurodiversity. Nor is it linked with being short - on the contrary, many people with EDS are tall and have what's called a marfanoid habitus (long, skinny arms).

Dr Jessica Eccles has spoken at webinars regarding POTS MCAS EDS hypermobility ADHD etc.

https://www.adhdwomenswellbeing.co.uk/adhd-podcast/ep97-dr-jessica-eccles?format=amp

https://www.frontiersin.org/journals/psychiatry/articles/10.3389/fpsyt.2021.786916/full

Dd has EDS, pots, adhd and autism. And coeliac disease and has had multiple pulmonary embolisms. Oh and mcas. I joke she’s collecting letters after her name.

there’s definitely talk about EDS and ADHD/autism being linked. Also now talk about eds having an autoimmune element as so many people have an autoimmune disease alongside eds.

dd’s haematologist has just done a full genome mapping on her as he’s interested as to whether there is something which might link it all. Six months wait for the result.

@quarterofanonion Again, this is early discussion around an emerging, possible link, not strong confirmatory evidence of a definite one.

@CerealPosterHere I definitely agree it's possible there may be a link! I'm autistic myself. But that's probably why I'm so fussy about accurate allusions to the state of the evidence - it's not a confirmed link and it's not something for which there is currently a strong or overwhelming amount of evidence (complicated by the prevalence of "bad" diagnoses in many of these clinical groups). I often see it alluded to as if it's confirmed when it really isn't.

Actually EDS usually presents in short people, Marfan's presents in tall, thin people.
And EDS does have links to ND
I say this as a 5 foot EDS patient with ND who is a member of several groups for EDS patients and a member of a panel of medical experts in the field.