I suspect sepsis - have I been fobbed off?

[teamaven]

I called an ambulance for my 5 year old daughter this morning (who is never ill and I’ve never phoned an ambulance so to me it was serious). She woke up at 1:30am screaming and crying that her lower left side hurt. She said she couldn’t move and wouldn’t settle all night despite us thinking she’ll be fine and trying to go back to sleep - then started complaining of a headache at the back of her head and her temp went up to 39.9.

She was extremely hot to the touch, a bit confused and lethargic so I panicked and called an ambulance. After an hour of Neurofen her temp went down to 38.4 and stayed like that for a couple of hours.

I suspected a urine infection (possibly that had developed into sepsis!) because she has had one before and her pull up (she’s still in them at night) was so heavy and absolutely reeked. Her urine test showed signs of infection so the doctor agreed it was probably an infection that had travelled up.

Now, I did ask him to do a blood test anyhow and he said it wouldn’t show anything, but would it not show how bad the infection is ie sepsis? He sent us home with 10 days oral antibiotics and daughter is asleep now but I’m scared that based on her symptoms it was much worse than just a urine infection? The very high temp, lethargy, confusion, headache?

Can anyone provide what the usual pathway is when a child comes in with those symptoms? I feel like we shouldn’t have been sent home - at least to be observed over a few hours?

She has antibiotics, keep up with fluids and pain killers. A UTI can be awful. If she gets worse then you seek advice again.

If she had sepsis she wouldn’t be back at home. My baby had sepsis at 6 weeks old. They are really careful about it.
She is on antibiotics and that’s all they can do for her anyway, even if she does have sepsis, it’s not like “here’s a magic pill that cures it” it’s just more and more antibiotics.
All of her symptoms point to a nasty UTI, possibly cystitis and they seem to have done the right thing (would you rather she risks getting a worse infection being in hospital, or that she’s home, safe and being cared for by her mum?) and given her antibiotics.
If she gets worse after a few days, take her back, but I would put money on it that she’ll be feeling better once the fluids and antibiotics have started to work.

Urine infections are very bad even without sepsis.

Sepsis is you die within 24 hours. If she gets worse go straight back.

Urine infections can kill you slower but still a risk. They are not mild things.

My daughter nearly died of one at 6 weeks old. She spent a week in hospital dripped up and was lucky that she only lost one kidney.

’Just a UTI’ is really not the phrase that comes to mind.

I am not trying to panic you by saying this. You have antibiotics. If she’s getting worse go straight back. Ask for a kidney check too - they can’t do this immediately they need to wait 6 months to see what the final damage is.

What does he mean blood tests won't show anything? How dares he? Abject, disgusting liar. If you really really really suspect it is sepsis, take her to a different A&E yourself, but pronto, if you think this is sepsis.

An as far pathways.. you should have seen the furore when my daughter went in. They aren’t going to do that Willy nilly. Straight on a table. Ivs in, blood draws, lumbar punctures without anesthetic.

It was horrendous. You don’t want them doing that ‘just in case’

How was she when she left the hospital. I've had sepsis and wouldn't be worried with those symptoms. Sounds like a normal infection.

It’s horrifying isn’t it? My baby was only 6 weeks old, I was rushed out of the room by a lovely nurse but I heard his screams down the corridor, just absolutely horrific.
Op you do not want her going through that for nothing!

I think your perception of a uti might be the issue here.

UTIs are infections. The clue is in the name. Infections tend to make people feel unwell.

I hope you got safety netting advice (eg if she gets worse, gets more lethargic, doesn’t improve with paracetamol / ibuprofen then come back).

Sepsis is when the infection response spreads further round the body. It shows in symptoms more than in blood tests.

Ten days is a pretty hefty antibiotic course. Rest, plenty of fluids, pain relief, antibiotics as per the instructions and monitor her.

If she deteriorates go back. Otherwise she’s better at home.

There is a sepsis risk chart on NICE which you can run through but as PP have said, this sounds like a horrible UTI but not necessarily one that has triggered sepsis.

https://www.nice.org.uk/guidance/ng254/resources/evaluating-risk-of-severe-illness-or-death-in-all-settings-children-aged-5-to-11-pdf-15494513295

FWIW I had a horrific UTI last week, crippling pain and fever for a few hours. I felt mildly wiped out the next day but back to normal the day after with no antibiotics. Your DD has my sympathy.

Sorry you went through that too 😢

Yes I had to leave the room. DP stayed.

Turned out she had urinary reflux so we have been on prophalytic antibiotics since and on high alert. It’s difficult because the high alert is really just watch and wait. We have had a few times when we think maybe that’s another infection but there’s nothing you can really do (as we are already on the antibiotics). And the urine samples took 7 days to show the infection the first place (weird bacteria) by which point she would have been hospitalised/ had permanent damage anyway.

That did make me feel a bit better because for a long time I blamed myself. Thinking if I had gone sooner she wouldn’t have permanent damage. Now I realise it’s just shit and you can’t just do all that ‘just in case’. You have to watch and wait.

I don’t know if it helps but for my baby he is now 8 and perfectly fine. Usually gets recurrent ear infections and throwing up due to a crappy duodenum but he’s generally ok. X

One sign of sepsis is no urine output. I would be very happy with full nappies. Also you can get sepsis on a low temp. Is she a funny colour, a rash. Keep an eye on her. (Sepsis survivor!)

Sepsis is serious but doesn't always result in death.

Thats lovely to hear 🥰

The young ages are so worrying! Especially when they cant communicate properly. It’s all guesswork.

She is fine now, just one kidney less but thankfully the lord gave us a spare 😅

Glad your boy is thriving 🥰

Possibly but

1. I mentioned to them I thought it could be a urine infection because of the smell of her wee but she had no stinging/symptoms prior (not saying you always get them) so what if it isn’t that and nothing else was checked ie kidney function, pancreas etc. This is coming from the 5 year old who had a fractured collarbone and wanted to still go to gymnastics straight after! I have never seen her in pain like this

2. Her symptoms are all over, she can’t lift her head from the pillow, in agony, she says her neck hurts (although the doctor said that can come with headache).

I am just unsure on the fact he didn’t do blood tests to see her infection markers to see how high they were. I know sepsis is treated the same - by antibiotics but they are usually given via an IV which is more effective. I’m just worried if it is something like that she might deteriorate too fast. I will see how she is tonight as she is still the same now, she says the pain is a bit worse

Why has your mind gone straight to sepsis? I only ask as you don’t describe anything particularly outside a normal infection like uti.

Obviously. I am trying to illustrate that sepsis in fast. In the context of OP they have sent them home and if it was sepsis 12 hours have now passed and OPs DD would be very very bad and near to deaths door. As in dramatically worse than 12 hours ago.

If it’s much the same level of illness as at 1.30 then it’s not going to be sepsis.

Btw on update with a stiff neck I would be more worried about meningitis. Is she fine with light OP?

It was the temp coupled with the pain and headache, if she has those without the temp I wouldn’t be as worried but obviously would want to know the source of the pain regardless as she can’t currently move in her bed. Also my nanna has had sepsis and almost died, she had similar symptoms

The temp is high but not unusually so for an infection. And it’s coming down with pain relief. I would let her recover and rest and not try and do anything else to her today unless you feel things haven’t improved after a few doses or if anything changes

No she’s fine with the light and no rash, it did cross my mind but I don’t think it’s that.

I would welcome any other thoughts, I just want to get to the source of her pain because she’s in agony - her urine had signs of infection ie blood, he said it wasn’t clear cut but agreed it could be that so I guess there could be a different reason.

I’ve started her on the antibiotics so will see how she goes over the next couple of days. My worry was that if it was sepsis she would deteriorate faster than could be dealt with

If you are at all worried, go back and demand to see a different doctor. Usually kids are quite resilient so for her to be this poorly would ring alarm bells for me.

i’ve called an ambulance a few times for my DC when they’ve had a temperature as high as that, I’ve always apologised to the paramedics and they always say they would rather come out and check everything is ok (more so in my situation as my DC is non verbal so can’t tell me what the problem is) than the alternative.

if your gut is telling you something is off, then it likely is. Better safe than sorry!! Xx

i hope she feels better soon x

Remember there’s Martha’s law

You know your daughter better than anyone. Trust your instincts here and as PP’s have already said, take her back to the GP or A&E if you are at all concerned. It doesn’t matter if it turns out that she’s fine, that happens all the time with kids, but much better to play it safe.

I agreed with the others who have said if you are not happy, take her back. My little boy has had urosepsis a couple of times now and it's scary. I would ask directly if it could be sepsis and if not why not.