Still seeking help-extreme fatigue-going to A&E-what to insist on having checked?

[Alexandra84]

Hello,
I posted a few weeks ago. Dd (8yo) has extreme fatigue. Blood test show eosinophils are 2.00 10 * 9/L. They were also raised a year ago, but GP declared the rest was 'within range'. Only after digging and asking for blood tests is it evident that's not true.
We have now, after seeing a second GP opinion, finally been referred to paediatrics. This appt is not for another 3 weeks.
She has spent all weekend in bed, and can't manage school tomorrow.
I feel I've got no other choice but to take her to A&E, I can't allow her to lie helplessly in bed with weeks before speaking to anyone.
Can anyone advise what I need to insist on. ECG? What other tests?
Just to be clear, I am so cautious of stretching services, taking time that is needed for emergencies, but I've asked twice now if there is anything sooner/cancellations, and we are no further.

ME/CFS, definitely. However I would dissuade you from using a&e as it doesn't sound like either an accident or an emergency. See the gp again or whoever she is under.

I hope she gets the help she needs.

A and e can do very limited investigations into extreme fatigue.

They are quite likely to put you at the back of the queue, check for infection/etc and then send you home.

My DD had CFS/me as a teen.

I'd suggest getting referred to rheumatology and doing an endocrine screen to check for thyroid hormones, vitamin deficiencies etc.

My area had a dedicated CFS/me clinic which was quite helpful.

Agreed, please do not use A&E - this is not an accident or emergency. Also, you don't "insist" on anything - you "ask". You will get a better outcome working with medical professionals, rather than setting yourself against them.

Thanks. As a grown adult, I'm aware of how to speak to people.
I'm seeking advice on my daughters health. A year of asking has led to nothing.

Thank you. Did anything show on blood tests relating to this?

There are no tests for CFS/ME

For your DD's sake please don't take her to A&E. The experience will likely be grim and you could spend 12 hours in a grotty waiting area in discomfort mixing with norovirus and flu. The staff will likely not run any tests unless they feel she is immediately in danger. If your GP has recently checked the vital observations and she's ok then it's possible she won't make it past triage without you being told to take her to the GP.

I'm actually in a similar boat with my DD and back in early October was alarmed as her energy levels just kept dropping and she was also in bed for significant chunks of days. Other symptom has been low grade fevers. She's had blood tests run which show very little. She had a full week off school and then we dropped her school timetable down to 1.5 hours a day for a few weeks and she is gradually recovering and going to school for the whole morning now.

I feel as though there was a physical trigger for her but that being unwell then made school feel overwhelming which then added psychological elements into the mix.

Something I found helpful was to ask school to write a report on the state DD was in to take to Paediatrics. It helped to support what I was saying as the 'concerned mother'.

It is worth phoning paediatrics at 9ish in the mornings for a cancellation appointment.

Call the paediatric secretary for a cancellation appt say you happy to attend short notice

Has there been any change in her skin colour? Or weight loss? Please make sure they rule out Addison’s disease.

There are so many horrid bugs at the moment doing the rounds which she could easily pick up in A&E so I really wouldn't take her. She doesn't sound like she's at imminent risk, and the last think she needs is to pick up covid and flu at the same time as well. Keep her quiet at home for three weeks if needed, but paediatrics really is the best place for her.

Could you ask the GP to run a wider panel of bloods in the meantime so that you can take the results to your appointment and speed things up? Testing for thyroid, vitamin deficiencies, iron etc?

I regularly check for weight loss, any bumps, bruises etc. There is (thankfully) nothing that has caught my attention.

Yes, thank you. I don't think her thyroid has been checked. Will ask if this is an option while we wait for clinic appt.

Did the GP have any suggestions as to what’s causing it?

Has her blood sugar been checked?

Abusing A&E won’t do much - CFS isn’t either accident or emergency.

You sound very stressed which will
not help your daughter.

This is not a A&E problem.

Speak to the GP again, they can refer to the children assessment ward for a same day paediatric appointment if they feel it is necessary.

Yes, I am, thank you.
My 8 year old daughter is unable to get out of bed. I'd be concerned if this wasn't a stressful time for a parent.
Strange comment.

Lyme disease is another possibility worth considering, with those symptoms.

They checked blood sugars levels a year ago and also most recently.
One of my parents is type 1 so this seemed the obvious answer but doesn't seem to be a link.

This is not an A&E issue

Not an A+E case, obviously.

A and E won't run any tests other than to rule out life threatening and acute conditions. Can you call the clinic tomorrow for which you have an appointment and ask to be expedited due to deterioration.

Please don't take her to A&E. If she has immune deficiency from glandular fever or CFS or ME, the place could be teeming with viruses and bacterial infections that will make her feel worse. And if it's anything like our local A & E, she could be there for hours and hours if they triage and don't consider her an emergency, sitting on uncomfortable seats in a stale place surrounded by people get angry, just waiting and waiting. It is exhausting. I was there for 10 hours with DS recently - who had had a bad accident, and my neighbour, who is in his nineties and also had a bad accident waited 12 hours recently. It's a hellish place. Avoid it.

Instead, just ring the clinic she is due at every day and politely ask if there have been any cancellations as you are so concerned.

I think I read your original thread. Did you check for allergies? A friend's daughter was exhausted permanently and turned out to have dairy intolerance.

Thank you. Will call tomorrow

I agree. But the UK test on this is notoriously unreliable. A woman was ill for years and told by Uk doctors that she didn't have it. Got tested again in France and given correct medication and is now much better. Maybe worth a private test.