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 child I know who was diagnosed with Lyme disease had blood tests sent off to Germany privately.

I wasn’t going to mention that part as I don’t know too much about it but it sounds like that’s a possible route.

I hope you get your answers OP.

I asked at GP appt, but didn't get far. Will ask again.
Outcome from first appt was to refer to mental health team, which I didn't agree with.

You sound very stressed

I think most parents would sound very stressed in OPs shoes.

I agree with asking to speak with the consultants secretary and ask to be put on a cancellations list and that you will attend at very short notice.

If there’s any of the more obvious blood tests that haven’t been done, I’d try get those done in the meantime.

Has she any other symptoms other than extreme fatigue ? How’s her appetite, any gastric issues - pain, nausea, constipation/runs? Any aches and pains anywhere else? When she is awake what is she like? Does she enjoy her usual tv, can you make her laugh? Will she play? Is she irritable or behaving differently than before the fatigue? What was her health like before the fatigue? Any allergies, repeat infections such as tonsillitis, ear infections ? Was she previously an energetic child ?

All these may give some pointers when you see the paediatrician. Are you keeping a diary of her sleep/awake times? I am crossing my fingers you get to see the paediatrician before 3 weeks. So hard and scary to see our children inexplicably shattered.

Outcome from first appt was to refer to mental health team, which I didn't agree with

I agree, that’s too early at this stage. They need to rule out physical causes first so they don’t miss anything. Obviously anxiety can cause a zillion weird and wonderful physical symptoms, but the doctor shouldn’t be going straight to that at this point. Unless there’s something incredibly likely to have triggered it - school problems, family upheaval/losses etc.

Going against the grain massively.

Your daughter is only 8, and has deteriorated to the point that she can no longer get out of bed. I would absolutely be taking her to the hospital to be checked over. She's a child.

I had to take my child into paeds A&E a few times for a chronic issue that was getting steadily worse. They booked in two investigations that we had been waiting months for to take place that day.

My child's consultant told me that when it comes to young children, paeds A&E is sometimes a necessary route to see a consultant sooner, as children can deteriorate very quickly, and waiting times for an appointment can be very long. Even when the condition of the child means they need to be assessed sooner - as seems to be the case with your daughter.

You are her mother and her advocate. If you think she is deteriorating and needs to see a paediatrician, then please take her to see one.

A+E will test for anything acute and then refer back to your GP. Given your daughter has had no sudden change in condition, there will be nothing else they can do. You will be back where you are now, having exposed your daughter to germs in A&E. Call paediatrics and see if they can speed up the appointment, and call you GP again to see if they can do anything to speed up the appointment. Did the GP do any basic tests? Blood test? Thyroid? Vitamin or mineral deficiency? I can understand your desperation to get your daughter seen, but even when you arrive at hospital via A&E, you can usually only access the medical procedures they can do in A&E. They can refer to other specialisms, but unless the person in unable to live at home or seems likely to die without immediate treatment, these will be referrals like the GP could do, not immediate appointments.

Thank you for taking the time to respond, much appreciated.
No gastric issues, no temps, but she is absolutely miserable. I think the fatigue has just taken away her ability to enjoy anything. She is incredibly irritable and we are treading on egg shells.
She is worried about up coming parties because she know she'll feel awful after. She's in bed at 7pm every night. We've cancelled Brownies etc to reduce fatigue.
I have a few more avenues to explore tomorrow morning.
Thanks.

Long Covid is another thing to explore, OP, though the NHS is now closing down paediatric LC clinics and directing children to ME/CFS services, instead. The only test which is almost always positive in sufferers is for blood micro-clotting and that’s incredibly hard to access. PANS can occur alongside it and leads to dramatic changes in personality. Rest is vital for now. There are super charities for both with resources to read up on and take to your GP. Good luck xx

Had she had tests for b12 and vit D.

She needs to be at the top third of the range for both of these (I have me/CFS).

Look at her diet too and cut out dairy, nightshades, gluten and UPF's and seed oils. This will help to reduce inflammation in her body.

You might think that doesn't leave her with much to eat but you'll just be keeping her meals simple. After a few weeks you can test her with nightshades to see how she tolerates them and look at reintroducing the dairy and gluten. Only reintroduce a new food every 4 or 5 days. Make sure her meals are 50:50 protein to veg.

My heart goes out to you - I hope she starts to improve soon X

Are there any patterns to the fatigue? Does it get better with rest? Worse if she has an infection?.
Are there any little niggling things she mentions that might be clues?

I don't see any harm in a &E. if he can't get out of bed, that's not ok in a young child! A&E helped us get an urgent paeds.cardiology referral recently when the GP was moving too slowly.

Has she had her eyes tested recently? My optician spotted what was wrong with me (Myasthenia) when I had been dismissed by countless GPs. I think the fact they focus in just on the eye means they spot things a GP might miss.

I would try and really notice everything about her symptoms and behaviour. I used to comment to my husband that I knew when I had done too much as my throat would feel heavy and that was my warning to stop and rest. Similarly that my eyelids would droop when I got tired. Tiny clues, but with hindsight big flags waving madly as to what was going on.

@MindTheAbyss I was just coming on to say the same thing - has she has Covid, is long Covid a possibility? Good luck you sound like a wonderful advocate for your child OP, it can feel relentless trying to find answers.

I would take a look at Long Covid Kids for advice. The fatigue management advice works for CFS/ME and any other condition causing fatigue.

https://www.longcovidkids.org/educational-toolkit

I had CFS/ME as a teen, then Long Covid which I still struggle with four years later. The link below was very helpful to me when planning how to manage my activity and fatigue, doing an activity/fatigue diary is very useful to spot triggers and times when the fatigue is worse. It can help reduce over doing it and the subsequent crashes. These are things you can do whilst you wait for the paediatrician appointment.

https://youtube.com/playlist?list=PL4Txk_yQKExDrsreeuCIVcu5cAv3-kVii&si=kOCMZe8KgSxZH18N

Also make sure they have tested iron, vitamin D, folic acid and B12 levels as part of the bloods. DD1 had very low vitamin D and folic acid after a virus last year and her fatigue levels improved with supplementation.

Happy to PM if you need anything more specific or want to ask anything about managing a energy limiting condition around school/study etc

I have a child who had ME/ CFS from age 11.

Please stop with the ED thing- it will not achieve anything.

You need to ask your GP to refer to community paediatrics for consideration of CFS.

You are also unwise to rule out assessment of mental health. Im a mental health nurse and i have a child with M.E - the symptoms can overlap.

As a starting point you must achieve some routine for her day .

Don't allow any phones an hour before she goes to sleep, and however exhausted she is she needs to go to bed the same time every evening and get up the same time every morning.

If this is ME/CFS recovery and optimising her health is hard work and a learning curve .
It is very much about lifestyle /stress management and modification - medication plays a very small part.

Did you look into sleep disorders? I was barely able to leave my bed for 3 weeks when I first developed narcolepsy, I'd wake up to go to the loo then go straight back to sleep.
When I had a bad bout of flu last summer which triggered a worsening of the narcolepsy I did the same thing again, didn't even remember waking up at all.

Epstein barr virus? But she would have other symptoms as well.
I assume her heart rate and breathing and urine are normal? Has she had a urine dip to check for diabetes?
Could she have depression? Although rare, young children can be depressed if for example they are being bullied at school. And they do not have the understanding or language to explain they are feeling depressed. I ask because spending all weekend in bed for 8 year olds is very unusual. Even seriously ill children will usually get up for a bit.

Has she been checked for glandular fever?

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

^

Kid's been sick for a year and you're splitting feathers on terminology

Bravo

Hope you get seen soon op 💐

Def check for diabetes again

this is almost certainly not going to be true, as its very rare, but after a virus such as EB or Covid you can still have ongoing viral infection and inflammation around the heart. this can be picked up in an echocardiogram and them MRI
(im only suggesting this as it happened to me!)
if all else is coming up normal then worth a shot? Its actually an easy fix too, and my fatigue has hugely reduced since treatment

If my 8 year old couldn’t get out of bed for three days, I wouldn’t definitely be taking her to A&E. Seems her condition has gotten worse in the past few days. Give 111 a call before you go, I really do think that will advise you to go to A&E. I hope you get answers and she recovers soon.

Is it at all possible for you to get a private appointment? I only ask because we struggled with NHS to get my DD diagnosed when she was 13. We managed to get a private appointment with a paediatric consultant who diagnosed her with CFS/ME, orthostatic hypertension and chronic migraine. It has been a very long road of trying different medications to find ones that help.

She is now over 18 so has been discharged back to the GP from the consultant and has not had much care since. There isn’t a test for ME, but they ruled out everything else via blood tests, ECG, tilt table tests et cetera. At least with long Covid there is now a little bit more understanding and help, so I hope you find somebody who can help you with the diagnosis. It is terrible to watch your daughter being so exhausted she cannot get out of bed. I really sympathise.

My sister was a frequent visitor to a and E when she was a teenager with acute abdominal pain. The only time they did anything more than give her morphine and send her home was the night they gave her 50:50 odds of surviving until morning. Thankfully she did.

Unfortunately the treatment of women, especially young women can be exceptionally poor. My sisters health condition that nearly killed her had been on going for 3 years but for most of that time was put down as a stress/mental health issue. If you aren't already I would be keeping a detailed diary of symptoms.

I'm not sure a and E is going to be the thing that changes your daughters treatment or give you the test results to find what it is that is causing the fatigue and given the amount of highly infectious illnesses in hospitals currently I would be avoiding a and E unless absolutely necessary.

At 16 I picked up a nasty virus, I had multiple blood tests, nothing showed up. Not visibly I'll but slept any time I wasn't as school and slept in the library in my free periods. When I was about 14 my mum had a similar situation. 3 months off work as she could barely get out of bed, loads of tests no conclusion. One day she had a fever and the next day she could start doing more and in a week she was back at work.

I would be getting hold of the paeds secretaries and ask to be put on the cancellation list. Be prepared sometimes you get very little notice, once when on the cancellation list with my daughter I was offered an appointment 20 minutes later unfortunately as the hospital is a half hour drive away we had to decline it.
The paeds dept at our local hospital has an assessment unit that the GPs can refer too. We have used this service a few times - once where we were sent directly and other items we were told we could call them if things got worse overnight. It allows us access to paediatricians whilst bypassing a and E. It might be worth seeing if your hospital has similar. They give consults to the GP too when they need advice on next steps.

My mum "insisted" on an urgent endoscopy for me once (after several discharges from a& and after she had discussed with consultant friends at other hospitals)

It saved my life.

The doctor who she had had to bulldoze to persuade to do it apologised to her profusely

Definitely escalate with the GP and ask to be put on cancellation list at clinic. I don't think A and e will do much for you so your best bet is to get in front of a specialist

Oh and when my son was 8 he asked me to take him to the doctors and when the receptionist said we had to go home and wait for a call he refused to leave till he saw a doctor. He is a mild mannered and sweet child but he knew he felt very ill. Sometimes we have to insist.