My son had sepsis - AMA

[nonamewhatashame]

My son had sepsis when he was 12 months old. I’m desperate to raise awareness of sepsis as his was preventable. Instead of a long lengthy post of our story, I thought perhaps a AMA might be a better option.

That sounds really frightening OP, I hope he’s doing well now.

Was he unwell prior and when did you realise it was sepsis?

I worry about this every time my little one is ill. It’s so hard to know what’s a normal viral illness and what is something more severe. Could you tell us the warning signs you encountered?

He had been unwell with ear infections and bronchiolitis in the weeks leading up. But we knew this was more than that. His cry was different, his temp although came down with calpol shot back up to 39/40 after 4 hours. He was often shivering. Multiple GPs insisted just viral (he did have red ears and throat and bad cough).
one morning, his hands, feet and lips turned blue. Skin mottled. Shivering. Went to a&e, told it was viral again and sent home.
he continued to get worse. Back to a&e, blood and urine done (crp of 255 and urine showed infection). Ultrasound of kidneys showed infection. Only found out it was sepsis when in a later discussion a nurse said “when he was here with urosepsis”.

Gosh that's terrifying. How is he doing now?

• gut feeling this was more than viral
• his cry felt different, like a pain cry
• shivering with temp
• barely sleeping at night due to temp and crying
• temps of 39/40 which did come down with calpol but shot right back up again after 4 hours
• pale
• v v lethargic
• lips, hands and feet turned blue
• cold to touch

(last two were late stage and what took us to a&e)

It’s been a long journey. He has had multiple ultrasounds of his kidneys. A radioactive dye scan of his kidneys, blood tests. He was also put on prophylactic antibiotics for a year. He’s now two and doing really well. No permanent damage to his kidneys and off antibiotics. We, however are completely scarred. The hospital admitted to medical negligence so that’s another thing I want to raise awareness of

I’m so glad he’s doing well now. How traumatic for all of you x

This is giving me a shiver down my spine. My daughter has a cold, came on on Sunday. She had a fairly mild fever and her hands felt a bit cold through the day. Just before bed she was extremely irritable and tired, she was shivering, her cry sounded different, hands like blocks of ice and fingers completely white, cheeks blotchy. It was the icy cold hands that made me put two and two together with all the other signs, she fell asleep very quickly and I phoned NHS24. They referred her to the ambulance service and we got a call back from an ambulance service GP. All of this had taken nearly 2 hours and GP asked us to wake her. By this time her hands were cosy and she was no longer shivering. She just seemed different, she went back to sleep and is much on the mend. The next day I still felt like I was reeling from it. The similarity with your son's symptoms is chilling.

I don't really have a question for you, but thank you for raising awareness and I'm glad your son is doing well.

Bumping your thread too!

There was a little boy with all the same symptoms as yours and he died. His name was William and I think his parents took him to the GP/ a&e 11 times and were brushed off and sent home where he died. He was one. I often think of his mum. Reading their story has made me always consider sepsis and be aware of the signs. You are so right to raise awareness and I am so happy that your little boy is well now

No q’s OP but thank you for sharing this and raising awareness ❤️

I’m so glad she’s ok and on the mend. it’s so hard especially at night trying to make decisions on urgency I totally understand

I remember William and follow his mum.

She taught me that if you’re worried, always ask “could it be sepsis?”

we were 11 visits too. Those poor poor parents. Something I would like to raise is the ‘sepsis pathway’. I think it’s good for parents to become aware of it. It’s what the hospital put them on if they have any red flag symptoms. That sepsis pathway leads to certain tests and obs being done as a matter of procedure. Eg, blood, urine, iv antibiotics immediately, half hour obs.
parents can ask if their child has been put on this once they have been seen at A&E and then know what tests their child should have. We didn’t know this. We didn’t know he had been put on it. And then subsequently, we then never knew it wasn’t followed…he had been put on it and then in error, sent home.

Absolutely. I quickly googled the cold hands while I was doing her bedtime story, it was just something niggling in the back of my mind. My initial Google was reassuring but I was lying with her until she fell asleep, which took about 2 minutes!! In that time I started adding up the other symptoms.

It was the icy cold hands that resulted in NHS24 referring her to the ambulance service, but as it turns out this can be a normal sign of the body fighting a virus too. I would make the same phone call in a heartbeat if faced with the same thing again. Or maybe even 999 as we live an hour away from the hospital.

You can never be too careful.

Oh my god. That is horrifying, him being set home after being put on the sepsis pathway.

I am so glad your little one is OK OP. My younger brother died of totally avoidable sepsis that he had while in ICU. There is not enough awareness about it at all.

If you have had spesis then you’re at an increased risk of developing it within the following year.

@Moen its cowardly but I can’t bring myself to follow her because the picture of her and little William breaks me but he has changed the perspective of so many parents through her efforts to raise awareness, I am so desperately sorry for them and their lovely boy

This sounds terrifying. Thank you for sharing the experience and raising awareness.

I’m so sorry xx
It can often be avoidable.
for my son it was a urine test, a simple urine test. But his viral illness was focused on instead and no questions asked if it could be something more. That combined with the catastrophic error of the sepsis pathway not being escalated led to sepsis.