Shiga Toxins - advice/explanation please

[Keggles36]

Can I just start by saying please don't post with terrifying things from Google - I've already read all of them and am besides myself. I'm looking for if anyone knows anything about this/can explain it to me.

I took my 12 week old to the GP last week as she's been pooing very regularly for about 4 weeks and had started to have mucus in them. No blood. No diarrhoea. No fever etc.

I thought it might be CMPA or something as we recently started combi feeding. The GP advised it was a foremilk/hind milk imbalance which is utter rubbish - I'm a midwife and the poo didn't resemble that at all.

He agreed to do a stool sample. It has come back at negative for bacteria but has Shiga toxins which look like they are produced by ecoli (specifically STEC). But no ecoli has been detected.

Does anyone know why this could be? STEC is a reportable illness and quite rare. Why does she have the toxins but not the infection? Could she be about the develop the illness? I read it can cause HUS which can be deadly.

The GP doesn't seem to know what they're talking about and openly said they hadn't really dealt with it before and to just keep an eye on her - but we're considering taking her to a and e to see an actual paediatrician? Any thoughts, experience, advice greatly welcome.

I am not a doctor, but I would suggest you speak to another GP at the surgery who knows more about microbiology. The toxins can only be there if bacteria are present, though I don't know the rate of false positives.

It is not possible that the stool had no bacteria, and unlikely it grew no e coli so I presume they meant that no STEC grew on the culture. It's perfectly possible that the bacteria are present in the bowel but not present in the sample. It's also possible that the bacteria were cleared by the immune system and just the toxins remain.

The health risk for these bacteria is due to the effects of severe diarrhoea particularly in small children which will be why the GP recommends keeping an eye on her, if she is well in herself taking fluids, no loose bowels or high temps I wouldn't be overly concerned. I certainly wouldn't take a child with few symptoms to a and e as I doubt you will get the response you are looking for.

If it continues I would ask the GP for a repeat stool test and referral to the hospital paediatrics. But again I stress I am not a doctor, if you are concerned please get proper medical advice.

I haven't seen this exact scenario, but in any child with proven enterotoxin releasing E coli I've always done bloods to check renal function/platelets, and if any concern on those have repeated in a day or two to check for trends. It's difficult for you to just keep an eye as the main marker you can look for as a parent is urine output, and between passing multiple stools and the absorbency of modern nappies it can be hard to tell. I think if I had a GP call me with this situation, I'd be wanting to see the baby, have a chat with the microbiology consultant, consider keeping in to observe, and probably doing at least one set of bloods.

And yes, over the years I've seen several children developing haemolytic uraemic syndrome from mostly E coli 0157, so I do tend to be cautious.

This sounds really stressful and worrying sorry you are having a tough time.

I think you should stop using your current formula batch and keep it and keep any other recent packets of formula you have used. This should be reported to the company as this could potentially be a case of contaminated formula.

Are there any doctors you know through work who may be able to find out more to reassure you. I believe HUS is a very rare complication, but it's still frightening to think about. Would getting some sticks and dipping her ring regularly reassure and support you?

A more appropriate way if seeing a paed is to request a referral from the GP.

don’t sit in a&e for good knows how many hours, with neither an accident nor an emergency. You’ll only be sent away to get a referral anyway.

what did the microbiology report say? Surely if it’s notifiable the lab will have reported and you’ll have EH or whoever on your doorstep?

You need a microbiologist at much as a paediatrician! You need a bigger A&E - or a referral to Infectious Diseases/Microbiology (preferable to A&E).

I am wondering how they detect Shiga toxin without detecting E coli and what tests they ran.

@Adhdparent123 we've spoken to a different GP after asking for someone who knew what they were talking about, and he used Google too and was not reassuring. He asked me if it was notifiable. They referred to paediatrics but have said it often takes the team a few weeks to look at referrals. The concern is that these toxins damage blood vessels and cause clots that can cause kidney failure, rather than the affects of the diarrhoea for dehydration 😓

@nocoolnamesleft thank you. The GP hasn't done these things, so I'm tempted to just go to a and e now. She's not herself at all and although I think it's probably from her vaccines it's just hard to know and she's so little.

@CharityShopMensGlasses that's a good idea, I'll stop using the formula - she feels well from the breast now anyway, only has a couple of bottles a day as we had weight loss issues and i didn't trust my supply but everything back on track now.

@Whycanineverthinkofone the GP has referred but said it usually takes two weeks for referrals to be picked up, whereas it sounds as though the right actions haven't been carried out now. I had to tell the GP it was notifiable as per public health England or whatever it's called. The report says no bacteria isolated, but toxins present. We've called 111 and an out of hours gp is going to call us back.

@OtterMummy2024 this is what we're wondering too. A friend suggested maybe she's cleared the ecoli and the shiga toxins remain as apparently they're produced when the ecoli is threatened? We've not been a and e, but considering going as feel sick with worry.

I don't understand why the GP didn't just consult the on-call microbiologist if they really didn't know?

I don't think A&E would turn you away given she's so tiny, not herself and she's had an abnormal result.

I would just go. You will only worry all weekend if not - and even if she is fine and it's just the vaccines, she'll probably sense your nerves and be quite unsettled.

Hope all is fine, sending unmumsnetty hugs

Thank you, I really need those hugs she's just so little and I'm so scared something is going to happen to get.

I've been thinking about it, and I'm pretty uncomfortable that this hasn't even been discussed with paeds. Now we're into the weekend you're pretty much stuck with 111 or A&E as a way in. Problem with A&E is all the kids with respiratory bugs breathing on her, but worried 111 might be dismissive if they hear you've already seen the GP today. Or was it just a phone call? If the latter, may be worth trying 111, as a way to bypass A&E.

@nocoolnamesleft thanks for getting back to me again ❤️

111 got out of hours to call me, they were dismissive and said they hadn't really heard of it, they didn't know why she doesn't have ecoli but has the toxins but we just need to go to a and e if she gets symptoms of: blood in stool, lethsrgy, re ash, temperature, stopping feeding, reduced wet nappies.

Apart from being really unsettled and still having the weird mucusy poo regularly she's fine and U don't really want to go to a and e with a well baby and catch RSV or something.

I've attached a photo of poo but blurred it so feel free not to look, but if you do do you think it looks like normal 12 week combi fed poi, or diarrhoea.

It could just be CMPI poo. But (shit, this is outing) when I had HUS as a slightly older baby, I apparently never had any blood in my stool.

@nocoolnamesleft so as an aside... Do you think that looks more like CMPI rather than diarrhoea? Because we had slow weight gain, and more these poos, so really do think an intolerance isn't unreasonable. But everyone has told me I'm wrong (health visitors, midwives, doctors).

I'm sorry you were so poorly, are you kidneys etc ok now? She's literally had no blood, and been well other than the odd poos... But I've read it can be carried by symptomless patients? So she might have/had it and not be really sick? And that the toxins can be left after the bacteria has cleared.

Honestly, really hard to tell just from a picture.

@nocoolnamesleft thanks though, sorry I know it's s nightmare when people suddenly start asking loads of random questions when you can't see them in person! Have a good evening 😊

That looks like normal baby poo. What did it look like before? Was she ok in herself before jabs?

@fashionqueen0123 before it was more pasty with bits in it rather than mucusy slimy?

She was well in herself before vaccines, being out of sorts started about 4 hours post vaccines (so she tested positive for shiga but had 4 days of being normal between testing positive and her vaccines if you see what I mean, then became out of sorts).

With CMPA (non. IGE but still an allergy not an intolerance) the clearest test would be cutting dairy and soya from your diet for a fortnight and seeing if it makes a difference. Soya protein is so similar in shape to dairy that they usually cause the same symptoms. If the symptoms improve you would stay dairy free for another month or two and let her tummy settle, then challenge by you having a dairy product and seeing if the symptoms return.

There isn't really a way to know otherwise. If you make this dietary change taking calcium supplements is advised.

The concern is that babies are over diagnosed and it's thought to be rare....so nobody wants to diagnose it these days.
But slow weight gain and stools worsening starting formula could indicate this.

This is just my experience as a mum with children who have CMPA

From the photo it just looks like your typical yellow breastmilk poo but I appreciate it might not show up in the photo what you’re mentioning.

Hopefully shell be back to her usual self today then. I found the rotavirus made their tummies funny for a couple of days & jabs gave them a slight temp and bit grumpy.

How's bubs today?

If it reassures you in any way, we had much weirder looking poos than that (and no diagnosed problems, thankfully!)

Mucousy poos can be when they're swallowing lots of saliva due to teething?

Hope LO is OK and you've all managed to get some rest x

@BananaWoman999 apart from being cranky she's fine and we've had some smiles. She doesn't seem like an ill baby, just really annoyed easily at the moment but that could be anything - teething, growth spurt, vaccines, gas 🤷🏼‍♀️ she's not vomited again, still has good wet nappies and is feeding well. If I didn't know about the toxins I wouldn't be worried 🤷🏼‍♀️ she also suddenly has so much saliva!

I spoke to a friend who is a paediatric doctor and specialised in global health, so has reasonable microbiology knowledge. She said it could be that she had an ecoli infection and was just hit very ill, and the toxins are left over from that and will clear. Apparently babies can shed them for up to a month.

I'm trying not to panic.

Thank you for being so kind xx

Glad to hear she's doing better.

I remember very mucousy poos when my LO was teething and he had quite green poo at times too... goodness knows what would have been found if I'd taken him to the GP!

At work last week we had a baby test positive for H.Pylori in a stool sample and no one knew what to do with the information 🤷🏻‍♀️

I imagine quite a lot of us would test positive for something if we were all tested even without symptoms! It's a minefield!

Anyway, I hope she stays well and gives you a good sleep tonight x