Every parents worst nightmare

[areweonabreak]

Sorry for the Daily Fail link, but I saw this on GMB this morning and I've been crying on and off about it.

Sepsis is without a doubt a killer, my DD was very very ill with it when she was 10 months old. We'd been told by 3 Dr's - 2 GP's and 1 A&E doctor that it was just a virus. For background she'd been poorly for quite a few days with a high temperature but no other symptons. We just couldn't get her temperature down. She was a prem baby and very small for her age but up until then she'd been doing very well.

It was only when I saw a Registrar walking past that had looked after her in SCBU, I insisted that she take a look at her. She also said she didn't look septic but she couldn't dismiss what I was saying. She did a quick blood test and her CRP levels came back at 260 (if you know you know)

She was immediately given a shot of antibiotics into her cannula and then blue lighted to a larger hospital where she underwent a lumbar puncture as they were then convinced she had meningitis. Thankfully she didn't. We never found a cause for the sepsis (as it's normally a secondary reaction) but it is thought that it was probably a urine infection.

At this time when our A&E is in crisis and you could be sent home or not taken seriously the one bit of advice I'd give to anyone who thought that their child was seriously ill is to insist on a CRP test. This can be done very quickly and will give Dr's a very clear indication of how poorly your child is. If the CRP levels come back below 10 then this is a very good sign. We were told that the threshold for starting intravenous antibiotics was a CRP of 50 and my DD's was 260!!

I don't want this to come over as alarmist but that simple blood test could have saved this little girls life 💔

https://www.dailymail.co.uk/tvshowbiz/article-11919361/Jason-Watkins-admits-blames-daughter-Maudes-death-Sepsis.html

It's so sad.

A 6 year old girl lost their life in my town a few weeks ago to sepsis. I have a 6 year old. For days I couldn't stop thinking about what her parents were going through. Poor poor girl and her family.

Thank you for sharing and reinforcing the importance of being aware of it.
It's always better to be safe than sorry.

DS15 was incredibly poorly with sepsis. I can’t fault his medical care though - the receptionist at A&E took one look at him and radioed for him to be taken through so he was seen immediately (he was at this stage, in the doctors words, “an incredibly poorly boy and you should prepare for the worst”)

Maybe it’s because he was an older lad that we were taken seriously.

He made a full recovery though happily, but it really upsets me when I see stories that have the opposite ending as that was so close to being us.

Snap. Dd was dismissed by 2 GPs and a hospital doctor ‘it’s chickenpox’. Her big sister had had it bad but this was something else. She was 13 months old. Dh phoned up the hospital waiting room (been in there all night as ‘just chickenpox’ and ‘we have got more urgent cases to see’). I was half delirious through lack of sleep but screamed down the phone to Dh to get here as she’s not going to make it. Nurse tutted (she’d been tutting all night at me) but looked at her, went a bit white then all doctors crowded round. Her crp was 259 and she had strep A and Staph B as well as chickenpox. I remember giving consent for an antibiotic from France that isn’t normally used? Took 7 weeks to sort.

This makes me incredibly angry, you poor things! Very few people know about the CRP test, I really don't know why it isn't carried out more frequently.

So glad he's now ok but it doesn't bear thinking about does it

I agree, every parents worst nightmare

Training for healthcare workers in the detection of sepsis, the use of sepsis scoring systems and safety netting are common place now as it's also every clinicians worst nightmare

www.what0-18.nhs.uk/parentscarers/worried-your-child-unwell/sepsis-spotting-signs

I haven't had to deal with sepsis with my young children but I recently went on holiday and carried the signs for sepsis card with me after reading a few threads on here.

But my experience of being dismissed as a mother / first time mother is the sake as others. My son was reacting to cows milk with instant eczema that was not healing along with plenty of other signs. My doctor did not believe me and the health visitors wouldnt help as they couldnt undermine the doctor. but after insisting he issued antihistamine but said he is only prescribing for my peace of mind and gave me this look like "I know you're wrong and I'm right but I'm going to give it anyway to get you out if here". I said thank you but I was furious. Sometime down the line my son had an extreme reaction to raw egg and another time a reaction to cashew nut paste. Both needing hospital admissions. The doctors said that the antihistamine definitely halted the reactions and bought him time. The egg reaction is what finally got their attention and I immediately made it clear that my gp and health visitors have been ignoring my concerns and as a result my son has been suffering. He has since been given an epiPen and is seen by the consultant. We believe he is also on the spectrum so I've had to advocate hard for that as well. It's exhausting but yes I think when my husband is there, it seems like they take him more seriously. Its just I'm much more vocal and articulate about his conditions so eventually they have to go off what I'm saying, but still my Husbands nods are what seem to add value.

It's shit but we will all keep going for the sake of our precious children.

I know this is going slightly off topic, but just thinking about this and talking about it has brought back some feelings that I had at the time. I remember sitting at home one day with stuff just running over in my mind and I had the most intense desire to take a pair of scissors and hack off my hair. I'm now sat at my desk with a pair of scissors in my hands with some of those same feelings. I've now put the scissors down 😂 but seriously not being listened to and that all consuming worry is just awful

Big hugs to anyone who has been through it, not just with sepsis but with anything else where they just haven't been listened to xx

What a tragedy, I’d not read about this before. It’s absolutely terrifying. I had septic shock whilst giving birth and I didn’t even know I had an infection. Started feeling hot and within about 30 mins was blue and shaking. Luckily I had a midwife who was very on it and immediate IV antibiotics. It’s taken me about 4 years to not go into immediate fight or flight the moment my DC have a slight temperature.

I will add that every time I’ve taken dc to a&e the doctors have always been quite hot on acting on parental instinct. They’ve always said to bring them back if I have a suspicion that anything is wrong. I guess we are very lucky at our local hospital.

I just wanted to add my recent experience of this. DD (12 months) had temperature, pinprick rash, averse to bright light and really fussy, took her to A and E and the receptionist put her down for "urgent care" rather than paed A and E, we were waiting 4 hours to be seen and only got seen after I saw someone medical going past and begged them to take a look at her because I suspected meningitis and they admitted her immediately for sepsis.

I didn't know we weren't in paed A and E because I was sent here with directions from reception and I'd never been to this hospital before. Am still horrified that DD had all the symptoms of sepsis/meningitis and non-clinical reception staff had the power to dump her in the wrong part of the hospital where she was just left for hours. If she'd developed meningitis by that point rather than sepsis she'd be dead now.

I drove myself to hospital feeling a bit poorly and found out I had a CRP of 448! Very scary.

Not sepsis related, but when DS was born, he was in hospital on and off for the 1st 2 months of his life. I kept bringing him in because he was always so unresponsive, took 90 minutes to take a 60ml feed (having to continually wake him up to keep drinking) and I knew something was really wrong. Had a female Dr (the same one every time) tell me I was basically being neurotic and 1st time mum anxiety etc. Then at 2 months he was seen in a routine appt for a heart scan, we found out he had 2 holes in his heart and several leaks from different valves in his heart.

We were blue lighted to the nearest specialist children's cardiology ward 3 hours away from our house who had him straight in for open heart surgery. Was told that if it had gone on any longer, he would also have needed a lung transplant!

I heard the parents whiny interviewed on 5 live early and they seem a silvery lovely and very wise. What an awful thing. I hope the documentary raises awareness again and in so doing saves some lives.

When I was first on MN there was a thing with people walking 'a mile for Maude'. Was it the same Maude does anyone remember? I had just had dd2 I think and so was a bit of out of so I can't recall the details properly.

Chiming in to say yes, definitely ask for blood test for CRP levels.

My son had been sick for weeks but up and down and kept being told just viral, wait it out. On 3rd a and e trip felt ds was really sick, but was getting ready to be discharged when they decided at the last minute to take blood. CRP levels of 259. We were admitted on iv antibiotics for a week. It was a very scary time. I dread to think what would have happened if they hadn't done that final check.

If you feel your child is really sick and you are not being taken seriously, ask them to take blood and check CRP levels.

Terrifying. I am so happy for you that your story had a good ending.

Why would you mention a PHD unless it is in a medical subject area?

its not even in a medical area, vaguely psychology but that’s by the by, it’s normally when they say ‘is it miss or mrs caffeine…, I suspect you might be overthinking’ and then tend to cut them off and say ‘it’s dr actually’ and it’s awful to admit but they tend to find their listening ears after that

Unfortunately medics are not psychics, they can only diagnose based on presenting symptoms not what may develop 6 hours later - they can't admit and give intravenous antibiotics to every child who is lethargic with a fever, most will have a self limiting virus which won't respond to antibiotics anyway, but the handful of cases they make the wrong call on can be catastrophic. No doctor wants to make that mistake but I can guarantee you (we spent far too many hours in kids a&e due to seizures) each day the waiting room is full of lethargic kids whose parents feel something isn't right, the parents are right yet it's not something the doctor can help with, what must happen though is for parents to be taken seriously if they return with a deteriorating child. My good friend is a paediatric a&e consultant, she makes these decisions and the thought of making the wrong call haunts her (as far as I'm aware she never has)

I hope you clarify that you are not a medical doctor. Do you know it is an offence to pretend to be a medical doctor?

I am a Dr, it is my title, my name isn’t mrs caffeine it is dr caffeine (well not actually caffeine but you get the point) that’s how the bank address me, it’s how I’m addressed at conferences and on papers, it is my title. I’m not claiming to be a medic nor attempting to practice medicine, nor ordering tests, there is a difference but when I’m pejoratively told ‘look mrs xyz’ yeah you bet im going to say if you’re going to talk down to me you can at least refer to me by my title. If they ask are you a medic, I’ll say no, because I’m not but I am a Dr

And the point is it wouldn’t be necessary if legitimate concerns (that in my case meet the NICE guidelines for referrals and further investigation) were taken seriously in the first place rather than dismissed as ‘maternal anxiety’

YANBU

My dd was sent home by our HP twice and OOO dr once. She was even turned away from one A&E, with the ‘just a nasty virus’ line. The second hospital I took her to was also pretty sure that it was ‘just a virus’ too. They gave in to my request for a blood test ‘as a precaution’ and we were put at the back of a 7 hour queue to wait it out.

Her bloods came back with a crp of 170 their attitude changed very quickly. In her case it turned out to be Kawasaki’s - not sepsis but still pretty deadly if not treated on time!

What worries me is that most people in my position may not have been as persistent. A lot of people would not have the confidence to take on multiple medical professionals and insist on bloods. I myself almost left the hospital at one point as they almost convinced me I was overreacting!

I think it is important to note that my experience had nothing to do with any special ‘mothers instinct’(the dr at the hospital congratulated me on my ‘mothers instinct’ when she read out my daughters CRP result). This narrative absolutely lets Dr’s off the hook. In my case I had reported very clear signs of an unwell child (mottled legs, high temperature for longer than 5 days not helped by calpol, unusually spacey behaviour, unusual cry) and, for whatever reason, these were dismissed and unacknowledged by multiple medical professionals.

My advice: if a Dr tries to send a child home with the old ‘it’s probably just a virus’ line, always question it. Ask them 1) what signs lead them to believe this is just a virus/ can they be sure, or is this just a best guess? 2) what signs you can look out for which would change this opinion.

I really do find this stuff terrifying. My dd is poorly at the moment with a chest infection and ear infection. She is perfectly well within herself but antibiotics aren't shifting either the cough or the gunky ear. I have been back and forth to the doctors and she's now been given another antibiotic to try. It's so so hard to see a GP at the moment. I have no doubt that many sick kids are flying under the radar simply because parents can't get them seen.

If in doubt I would always go to a&e.

The two humans I am most grateful to are the 2nd doctor who examined me as small child and diagnosed and treated me for bacterial meningitis. The other person is my mum because she was the one who refused to back down and insisted that I had something worse than an ear and throat infection and demanded a 2nd opinion in the first place.

Mothers instincts should not be ignored.

My teen is always tired, always getting every cold/virus around, cold to touch and recently had bleeding from her bowel. Do you think I can even get a gp appointment? Not on your life.
So frustrating.