Weakness, fatigue, raised temperature

[LegoInfestation]

DD is 7.5 and over the course of a couple of months has changed from being active and lively to being in a state of just not being ok. She has been seen by a paediatrician who has run the standard blood tests and done a chest xray and abdominal ultrasound, all results normal. They are coming to a diagnosis of either chronic fatigue or long Covid. Neither seem a good fit to me. If she’s had Covid recently it was symptomless and the description of chronic fatigue syndrome says post-exertion fatigue is a hallmark which doesn’t tally as my DD feels the same level of fatigue regardless of activity.

I'm posting here in case the list of symptoms below rings a bell with anyone. I need to be sure that we don’t miss something there could be treatment for.

Low grade fever (37.6–38) for 1–3 days at a time every week or two

Weakness

Fatigue but in a physical rather than sleepy way

Pale with dark circles around eyes

Nausea

Appetite down a bit generally and some days doesn’t want to eat

Overwhelming desire to lie down a lot of the time

Finds dressing herself too much effort

Pain in knees during and after bending

Needs to walk incredibly slowly and can only walk a very short distance

Feels insecure and is clingy to adult when out and about

Fine motor skills regression - handwriting, threading beads etc.

Loss of interest in activities

Any thoughts on this would be appreciated. This illness has quite a permanent air about it and I need to know I’ve done everything I can for DD. Any suggestions of tests that would be useful or ways to help DD would be helpful.

Ds was like this prior to being diagnosed with coeliac disease. He didn't have typical symptoms like stomach cramps. His immune system was shot, always knackered, cold and tired.

Does have the ring of an autoimmune disease. Hope you get some answers soon x

Does sound auto immune. I'd ask for a check on all likely auto immune diseases like lupus, arthritis, coeliac etc.

Coeliac disease doesn't always show in blood tests either.

Thank you

DD is due another round of blood tests in a couple of weeks time which will include the coeliac blood test. I’ve read up on how to prepare for that in terms of gluten intake.

I think they’ve run the blood tests that would indicate Lupus. We’re quite an autoimmune family so something of that ilk wouldn’t be a huge surprise but the blood tests were all resolutely normal a month ago. I have IBD and can have very healthy looking blood tests during a flare so maybe the tests don't always pick up on all autoimmune activity.

Also in addition I'm assuming you haven't been abroad recently to pick up a more exotic illness?

@Stirrednshaken no holidays outside the UK since 2019 sadly!

The only other potentially relevant thing to mention is that she had invasive Strep A and a bone infection last Christmas. She has tested negative for Strep A now though and Orthopedics are confident the osteomyelitis isn't to blame. She's had a clear MRI.

I’d be asking for a referral to Paediatric Rheumatology I think OP. It has that feel about it, especially with the periodic fevers.

I had two friends at uni with chronic fatigue and it does sound like it could be that. "Post excursion" depends on the severity, for my friends on a bad day excursion could be getting out of bed, walking to the loo, sitting long enough to poo, standing to wash hands, walking back and climbing back into bed. Having said that have they checked her head - regression in fine motor skills doesn't usually happen just because someone is "tired" even very unwell tired. Sorry but that sound more like a brain or neurological abnormality. I hope you get some answers soon.

@Puddlelane123 I asked about a rheumatology referral and didn't get a positive response. The plan at the moment looks like being to have her care passed over to the long Covid team but there's a very long wait for that. I'm just doing as much research as I can so that next time we see the paediatrics doctor I can advocate for DD as well as possible and ask again re rheumatology or any other referrals.

@stichguru The pediatrics Dr didn't see an indication for a neurology referral when we saw him. This is another one that I think might have to consider asking again about.

It's so difficult. The doctor was so thorough in the examination and taking the history of everything that has happened that it feels wrong to push for other specialist input but I feel very uneasy about not checking some of these things out further.

Actually just occurred to me look up HSP Henoch-Schönlein purpura (HSP). I'd totally forgotten, but my son had it aged 5. Very odd, basically the body fights a virus, gets rid of it, keeps fighting - thereby attacking it's self. My son didn't have the fine motor skills regression, but I imagine a child might if their finger joints were affected. I wouldn't say he had lost of interest in activities, but that could just be that that is your girl's response to feeling bad and wasn't my son's, if that make sense. Good luck.

Just to add HSP might be missed - we ended up in A+E with our son in lots of pain and even in a big city kids A+E they took time to diagnose it, hadn't seen it a lot.

@stichguru thanks for that info. I've looked it up and don't think my DD's symptoms match closely with HSP especially as she hasn't had the rash but I'm very grateful for any suggestions to add to the list to rule out.

I think I’d also be wondering about lyme disease, or some sort of post-strep scenario. How has she been in terms of her mental health OP?

I would request a Lyme disease blood test, though they aren't always 100%. Do you know if they've had a tick on them? They are easy to miss so even if you don't remember seeing one it could still be a possibility.

DD hasn't had any ticks on her as far as we know. We do spend a lot of time outdoors but I'm pretty good at remembering to do a quick check if we've been in tick territory.

@Puddlelane123 no diagnosed MH issues but she has had a crap year with one thing and another which has taken it's toll a little.

@LegoInfestation very understandable if she is also feeling rough physically. I just asked because post strep there is PANS / PANDAS which can cause a decline in fine and gross motor skills, but also neuropsychiatric symptoms such as OCD, separation anxiety, tics etc.

I would ask for lyme bloods just to rule that side of things out.