So worried about my daughter's health

[MotherOfDragonite]

Really just posting here for traffic. I ended up taking her to see a paediatrician privately and to have blood tests as the wait on the NHS was so long.

She has had fevers four times since October three to six days in length and going up to 41 on a few occasions and no other real symptoms other than a headache and chills. I took her in to A&E when it when up to 41.5 and they checked urine and she didn't seem to have a UTI so they sent us home and said it was likely viral.

I am just so worried about her. She is very pale compared to her usual skin tone and doesn't look right and doesn't want to do any of the things she would normally do, like cycling to school. She says she doesn't feel well all the time and still has a slight headache pretty much all the time and her "mouth and throat tastes funny", which everybody seems to think is irrelevant but she mentions constantly. She has shot up 5 cm since the summer but has lost 0.4 kg so she has gone from the 62nd centile on the NHS child BMI calculator to the 25th centile now. She's been properly sick (fever) for 18 out of the last 53 days, and missed 9 days of school since October. She has just moved to a new school in September which she absolutely loves, so it's not that.

I could tell that our GP (well, not our GP but the random GP at our practice -- we never seem to see the same person twice) thought I was just being an over anxious mum. And obviously they didn't think it was important as we still haven't heard back from them about being seen by anyone or having blood tests done on the NHS. I could also tell that the private paediatrician thought I was being silly and he also reassured me that she looked 'bouncy' and very healthy. She doesn't to me though, at all.

I'm so worried about the blood test results. I'm scared it's going to be something awful.

I kind of want to be told that IABU. That the GP and paediatrician are probably right. And that other people's children have had things like this and it was just a run of weird start-of-school viruses.

I had it a few years ago. I still don’t feel right!!

Viruses can be really funny, nasty things and can last weeks. Some symptoms aren't always what immediately come to mind when you think about viruses.

But you are her mother and you know her best. If you think there is something else at work other than a virus than keep pushing doctors.

I'm amazed but pleased they tested for glandular fever - I had to request it for one DD who'd had symptoms like your DD for years, they said it was an expensive test. Older DD was refused the test as she "wasn't sick enough"

So pleased to hear you have an answer and it's nothing too serious. Hope she picks up soon.

I do think little kids can be overwhelmed by the viruses going around and it becomes a viscous cycle. I have to say I give my pesky looking 6 year old floradix

@QueenofPain To their credit, the GP who did an emergency phone appointment with us a few weeks ago asked about other typical signs of Kawasaki's (which she didn't have). So that was on my radar! Apparently the other signs are red eyes and a rash or funny skin especially on legs.

Our GP practice did refuse to do any blood tests at all, which I thought was a bit wrong after she'd had four long and debilitating episodes of fever in two months and was losing weight and not wanting to do her usual activities...

We got referred to community paediatrics, who still haven't contacted us.

In the end we saw somebody privately. I am so glad we did.

I'm incredibly relieved to know what it is. She's really been poorly and it seems like a long recovery too (assuming she doesn't get more episodes of fever). But as long as I know what it is, it feels so much better. We are doing lots of Floradix and rest!

Glad you got a diagnosis and that it is not serious although it is nasty. As it’s highly contagious and spread through saliva, are there other children at school with similar symptoms?

No, nobody at school has anything similar.

But apparently, although Epstein Barr virus is very common among primary school age children, they usually don't have many symptoms. It's unusual that hers has turned into glandular fever afterwards (more like a teenager!)

That’s interesting. Hope she recovers quickly.

No medical training here. So glad you pushed and got a diagnosis. My oldest friend got glandular fever at university and it took her a year to recover as in she took a year off uni, went back to her parents and slept masses. I don’t mean to scare you or add to worry, my only point is take it very slowly and give her as much time and rest as she needs to get better. Don’t let school etc rush you.

Ok, so it is glandular fever. Agree with not rushing things. Just keep in mind, to not laziness. Lots of good nutritious food, extra rest.
With my DC I found that exercise/activity can cause over tiredness and then sick days due to the fever coming back (they were on swim team before but had to drop it for a year). So next step id recommend is to ask about modified PE at school so your DD can sit out or just walk if she feels not up to whatever they are doing.

Thank you, this is really helpful advice. Fingers crossed, she hasn't had a fever for almost a week now. But I'm going to be really careful to make sure she doesn't overdo it now I know the risks.

She's still incredibly pale and says she doesn't feel well a lot, but she's also a real 'joiner' and struggles not to do things! (eg she would never just be able to walk if doing PE! And she really wanted to go to her dance classes.) So it's lucky we've got the Christmas holidays to relax in.

I had it when I was 19 and it was six months before I felt ok!

Sending well wishes to you and your daughter. It's so horrible to see them poorly :( but you are absolutely doing the right thing, you know your daughter best.

Phew That's a great result. Did the gp give you any advice?

Sorry I mean paediatrician

Hope she's feeling better soon. I would also go back to the GP and complain!

No, the paediatrician didn't say anything other than to confirm the results in an email. We just had one appointment and then blood tests, no follow up. I do have some questions, like about why she got these fevers repeatedly and whether she will get any more. But I will probably only follow up with him again if she does get ill again, because it was private.

The NHS 'community paediatrics' team we were referred to three weeks ago for blood tests haven't even got back to me! I mean, she could have actually had something really serious like leukaemia. I makes me so mad.

I did actually complain to the GP surgery about the fact that they don't seem to be able to investigate any child's health concerns with referring to this community paeds team. But you're right, I should let them know ti was glandular fever (which they told me she couldn't possibly have).

They also made us an appointment with the nurse practitioner rather than the GP when I called up and asked for an emergency appointment, so in fact they didn't really bother at all and as far as they're concerned that was enough!

My dd had gf at 4, followed by recurring fevers. She has a periodic fever syndrome diagnosis now.

Yikes, @Runwayqueen -- does she still get fevers, or how long did they continue for? Do you think it was linked to the glandular fever??

So glad you got the diagnosis. After I originally posted on this thread I went back to look up glandular fever. All the websites say six weeks. I don't know a single person in real life who had glandular fever and was fine in six weeks. Six months is FAR more likely.

She just needs to take it easy and try not to overdo it. Hope she feels better soon.

I had it at 14. It floored me for almost a year. Every sniffle or headache I had in that period seemed to be amplified tenfold.
Poor little thing to have it at 6. Let her take it easy and set her own pace. She'll be up and down for a while I suspect.

Keep an eye on her and get a second opinion.