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.

The NHS is a shambles with this type of situation. From extensive experience with two children who we have only been able to get private help with I would try to get a last minute cancellation with someone like Dr Morgan, paediatric immunologist.

I would say ME/CFS. My son had Epstein-Barr Virus last year that has similar symptoms to Glandular Fever (and in some cases leads to Glandular Fever). He was very poorly, and we ended up on a reduced timetable at school, having to have days off etc. Had your daughter been ill? Please look into PANS too - Paediatric Acute Neuropsychiatric Syndrome. It usually starts after an illness like Glandular Fever, Flu etc. It may not be something your daughter has, but chronic fatigue is one of the symptoms. Google the symptoms, just to check. A lot of GP's etc don't know about it. My niece has it, and it's taken years to diagnose. I agree that 3 weeks is a very long time to wait, with your daughter so unwell. Could you call and ask if they can see her any earlier?

If she can’t go to school and literally can’t get out of bed I’d go to a&e

Unfortunately, and I don’t want to sound glib, this is just how things are - services are overwhelmed. One clinic a week has a very finite number of appointments. Can you afford to go private? Realistically that is your only way to speed things up.

Private will not speed things up unless you can also afford to pay for all the tests. All A private Dr can do is order various private tests, or tell you what the Dr tests he thinks the Dr at the clinic should order. You would just be wasting your money.
If her only symptom is fatigue, it can take a long time to diagnose as there are so many things that could be causing it. Generally even when someone has fatigue, they also have other symptoms that help diagnosis.

If you go private take a copy of any test results you have so that you don't have to pay to repeat them.

Another option is to use a local private blood testing company to get a comprehensive panel of blood tests then which you can then take to your GP to discuss. That would save you the private paedeateician fees, typically £295 for the first appointment and £150 or more for followup on top of the blood tests.

But query if it is worth the expense given you have an appointment in a few weeks.

Hope you get answers soon. It is so stressful seeing your child like that. We had similar when my son (since diagnosed with epilepsy) was having seizures. Once we were in they were great but we had to go private in the end (not uk).

Such strange comments on here but there always is about A&E on here

How did you get on with your son OP? Hope he is on the mend now.

Hi.
Thanks for asking.
So we had the consultants appt. An extensive selection of further blood tests were done to rule out any food allergies, issues within adrenal glands, dust mites, had chest X-ray and ECG.

All new tests have come back fine which is a big relief, though eosinophils remain high. These results just came back today.
She is due to have a head CT scan to check nothing else has been missed.

So at the minute we are just trying to manage her energy levels, keep to a routine . She is back at school, though I'm really worried how this will pan out over the weekend, we'll spend most of the weekend sleeping/resting I expect.

I'm relieved certain things are ruled out but equally worried that we still don't know what's wrong.

There's a good chance this is post viral and involves some long Covid component, especially with your mum having a history of CFS. I would definitely consider having her rest as much as possible, including more time off school. If it is long Covid related at all, then she will need to build up activity very slowly. The fact that she improved in summer also suggests she needs a lot of rest and finds it hard to handle the demands of schooling. That's also even more likely to be too burdensome if she is ND as you mentioned suspecting.

Have they tested for coeliac disease? The main symptom in my son at a similar age was extreme fatigue. The blood test would be tissue transglutaminase (ttg)