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

Things like this deeply deeply worry me, unfortunately you hear time and time again not taking parental, tbh in my experience mothers concerns seriously, it’s often dismissed as ‘maternal anxiety’.

Not just in terms of sepsis but my friend went through a very similar thing and her daughter was diagnosed with cancer. It took the father to insist something was wrong as medic after medic dismissed her mums concerns as maternal anxiety.

Awful. Sepsis is terrifying isn’t it. I think there is a lot more awareness of it since the death of their daughter 11 years ago now.

Martha Mills story is also so sad too, a similar tale.

I think all we can take from it is to be aware of signs and symptoms and not be afraid to push back; and for most of us, to thank our lucky stars that it hasn’t happened to us and hopefully wont.

I agree. Whenever we have a health concern with either of our DC’s, I insist that DH makes the call or does the appointment because they’ll take a man being worried far more seriously than a woman being worried. We also both try to slip in our jobs and qualifications because it immediately gets a response. It was also the case when I was ill, when I said I wasn’t well it meant nothing. When DH said that I wasn’t well, suddenly I need looking at. It’s awful that it has to be that way.

How awful for your friends 😔I totally agree. I've now almost made myself an expert in their health. I'd like to think I'm not a GP's nightmare but I've had 2 GP's now ask me what my background is in medicine 😁

What I've learnt is when you spend a lot of time in hospitals/appointments like I've had to you know how to work the system - not cheat just work around it. For instance when my DD had awful gastroenteritis I spoke to the GP who told me to go to A&E (without seeing her) - I said no if you think she's poorly enough to go to A&E you ring childrens ward and tell them that I'm coming directly. She did and it cut out all of the wait. On that occasion she was admitted straight away and put onto a drip. She spent 3 days in hospital getting over that.

I have to do the same, make DH do the talking and then drop in that I have a PhD, awful isn’t it.

and I always get ‘ oh they’re you’re first aren’t they… bless’. NO it is not maternal anxiety my child is unwell. It’s nowhere near In the same league but my eldest had growth problems and her paediatrician dismissed everything and then eventually put the referrals in ‘as a favour’ to me to ‘help my anxiety’. It was only when I paid private to see a woman that they actually listened, did some tests got to the bottom of the (actually very simple) problem and solved it and we’ve not looked back. The paediatrician STILL insists it was maternal anxiety. Medical misogyny is very very real.

I’ve had to argue for things in the past (GP refused to believe that my baby was showing signs of CMPA, until she saw the green slime poop that just happened to happen whilst we were there, when we were immediately referred to the hospital).

I genuinely think that experience woke me up to how you need to trust your own instinct.

I wouldn’t like to say for definite, but I suspect it might have boiled down to the GP surgery being in a very, very deprived area and I’m not one for dressing up (jeans and t-shirt, no make up etc) and them typecasting me, when actually I’m as educated/professional as they are albeit in a different field.

It is so awful. We moved house and it’s not a problem we experience in our current location. In my old house, it was awful. I was actually very taken aback when I saw my GP in my new house for the first time and they just completely believed everything I told them as a fact. I saw it described once as “being treated like an unreliable witness of my own body” and that’s really how it feels.

I was diagnosed with bowel cancer after doctors told me for years that I just had anxiety. Anxiety doesn’t cause rectal bleeding! They refused to do any tests and then I paid for a private FC, FIT and FOBT (all came back indicative) and they just ignored me and used that as additional fuel to argue I had health anxiety. I had a family history of bowel cancer and they just used that as a reason why I’d have health anxiety rather than a red flag that I might actually have cancer. I moved, saw my new GP, they immediately made a two week wait referral and ordered colonoscopy. Diagnosed immediately. I hoped that, after Dame Deborah James, attitudes would change at least with bowel cancer but I haven’t seen any shift from the groups I’m a part of.

I do think there needs to be greater accountability for when medical staff dismiss patients. It’s not acceptable in other industries and it’s wrong.

Is CRP that high always sepsis? I had a very high temperature and CRP levels of 290 recently and was told just severe chest infection and was given IV ABs. But sepsis was never mentioned to me. Maybe the threshold for kids is lower though to be fair.

Exactly this. I had to cry and beg for my daughter's illness to be taken seriously over 2 days at A&E. I felt dismissed as a hysterical mother. The next day they wanted to put her on a feeding tube. They could have avoided that if they had listened to me in the first place. 😞😡

Your story almost mirrors mine.

20 month DD, uncontrollable temp, seemed in pain, cried all the time. We were fobbed off for 6 days.

By the time we got to hospital her CRP was 290, she was in for 6 days and an outpatient for 4 days after that. She had confirmed by a lumber puncture bacterial meningitis, infection went into the bone behind her ear in her scull also.

Her symptoms:

Lethargic - as in when we sat her on the couch she would just lie down
uncontrollable temp
Moans and crying
No eating, no drinking but would wake up through the night gulping juice

BUT, having 3DCs something about this illness just felt different and i said this to the GPS although i was fobbed off with viral.

She had no rash, doc said she was 2 days away from the unthinkable.

We are so lucky she has walked away with zero health issues.

It was our worst nightmare and i my heart really does go out to everybody that goes through it

No one likes to use the word sepsis! But if you were given intravenous antibiotics with a CRP that high then it's a very high possibility that you had sepsis or were in very great risk of sepsis if the infection was left untreated.

Sepsis wasn't used for my DD. We had to go into our local hospital for intravenous antibiotics every day for 9 days. I asked a Dr there if she'd had sepsis and he really skirted around the word. Two weeks later my DD was very poorly again, again admitted and whilst they were putting the cannula's (in both arms) they kept saying again and again "she had sepsis 2 weeks ago" I absolutely hit the roof, once she was stable and waiting for transfer to the larger hospital I demanded to see all of her medical notes - and there is was in black & white - Sepsis.

I feel more than ever we all need to advocate for our own health and that of those around us. More and more GPs dismiss patients concerns only to discover the patient wasn't far off. I don't know why some still feel GPs know all and aren't to be challenged.

oh my goodness that gives me chills - you poor things. I still think about it, I have twins, one of them is always poorly and the other hardly ever poorly. Every high temperature it's at the back of my mind that it could be sepsis again or worse.

I’m so glad you moved practices! Let me guess you had anxiety and ibs caused by the anxiety right? No tests, just dismissed, no attention paid to the fact ibs is a diagnosis of exclusion. I follow a woman on IG who has a story similar, immense pain in bowel in pregnancy (pregnancy constipation) immense pain post birth = hormones, rectal bleeding = hormones, she paid for a private FIT test, and there was blood. Her GP still tried to refuse a referral, and got huffy because she insisted. Turns out advanced bowel cancer that had spread to her liver.

im on my own ibd journey, had dr refused FIT test but did calprotectin and it was only because the private consultant rang back the GP and insisted one was ordered because they didn’t have an opening for 6 weeks and he wasn’t sure I could wait, was why the dr actually did it. Thankfully negative. I wonder how different it would have been if my husband had the abdominal pain.

during covid I could not get a appointment for my DD - she had been suffering chronically with sleep apnea, constant runny nose, illness after illness. Her tonsils were enormous and I was convinced that her adenoids were causing the problem. I tried and tried to get a GP appointment but no one would see me as she wasn't "acutely poorly" In the end I googled the ENT consultants at the nearest childrens trauma centre. One of them had an email address so I sent him an email listing all of her problems since she was born at 33 weeks. He agreed to see her straight away - when I forwarded the email onto my GP they were more than a bit miffed but made the referral anyway.

As soon as the ENT saw her he booked in her for an urgent tonsil & adenoid removal and also had to fit grommets. 3 months later she had them removed and it's totally changed her life. I previously wouldn't have dreamed of taking matters into my own hands like that but I thought really what's the worst that could happen - he could say no. It's was an important lesson that I truly am my childs advocate.

I agree with this. When DD2 was 6 weeks old I was worried about her and when the Dr called me back (111 dr not my regular GP) she assumed DD2 was my first child - not sure why. She was quite dismissive of my concerns, but when I mentioned my older daughter she totally changed and said "oh well now I know you aren't just an anxious first time mother, I think you should go to a&e"

It turned out DD2 had a UTI and she was admitted for IV antibiotics. But if I hadn't happened to mention DD1, the dr would have assumed I was an "anxious first time mother" and would have reassured me everything was fine.

Im just out of hospital earlier this week with my son. He had chicken pox but unrelenting temperatures that i couldnt keep down with paracetamol. I KNEW sonething else was wrong. A&E kept saying "its viral" and trying to send us home. I just knew it wasnt. And thats why these stories are so important because i had these poor people who have lost their babies in my head when i refused to leave until they had run bloods. His CRP was sky high, admitted for IV antibiotics. Hes fine now, thank god.

Good for you! So glad he's on the mend now.

No, not always. CRP is a non specific acute phase protein. It would be raised in a wide variety of illnesses and indicates systemic inflammation. So by itself a raised CRP tells you something is wrong, but not specifically what.

Yes im exactly the same, shes my youngest DD and i class myself as a pretty rational person, but if any of them get unwell i really freak out.

Luckily my GP is understanding and sees them just to give me peace of mind.

Also worth noting, if you feel your child is very unwell try to go to a pediatric/children's A&E. We initially went to out of hours a few times ( weekend/bank holiday) and was told viral then ear infection.

I now would always go to A&E over a walk in/out of hours.

I have a vague connection to Jason Watkins. Lovely, lovely man . To have to live with this kind of grief must be so very hard. Sad to see that he feels responsible despite doing exactly what most of us would do.
Mothers instinct used to be respected by most health care workers .Now I think we are dismissed as anxious or guilty of Googling too much . With a child, surely the old fashioned policy of Better Safe Than Sorry should be in the forefront of doctors minds , especially in this age of telephone appointments.

My sister in law died from sepsis so I know how dangerous it is and quick it's frightening
my 16 year old collapsed with a diabetic ketoneacidosis,s few weeks ago (we had no idea he was diabetic ) to cut a long story short after being rushed to hospital and admitted to critical care,it was found he had a Necrotic pancreas so I'm pretty sure he also.had sepsis he was on all kinds of IV,medications including antibiotics
he spent four weeks in hospital,and he's home slowly recovering ,it's scary how quickly it takes hold.

We've said the same. My DD is also under an endocrinologist and we moved all of her treatment from local hospitals to Sheffield Childrens Hospital. Our local hospital doesn't even have a childrens overnight ward so we just go to sheffield childrens A&E now

Years ago long before the NHS was in crisis my then 9 month old was sick in his cot. It was more vomit than I had ever seen previously with any child and my blood ran cold and I went to A&E. I wasn't a worrier and it was ds2 but I knew something was really wrong.
A&E nurse was dismissive because he'd been sick once and "all babies are sick" but a junior doctor listened to me and agreed to admit him for observation because of my instinct that something was wrong.
Nurse on children's ward was downright nasty calling me a timewaster and telling me she would ensure he was discharged next morning.
Overnight ds became ill and it became clear to the paeds who were called that he had an intussuception and we were ambulanced to the children's hospital for surgery.
I was young but I wasn't inexperienced it's difficult though to get help if all you are going on is mother's instinct.
The same son, as an adult also contracted sepsis and our GP was incredible. I called him as he was in the surgery raised my concerns and he asked me to bring him straight there. He saw him straight away and called the hospital and sat with us whilst he called an ambulance. He phoned the ward every day and visited ds when he got home. I suspect he saved his life because had we waited until evening surgery it may have been too late.

Also sorry to add another message.

If you are worried about your child, and can have the father/male figure take them to GP or hospital i think this makes a difference.

My husband now does most GP apps with the kids because hes listened to far more and isnt called " a worrier" " over protective".