My son has meningitis and I'm trying to hold myself together

[heyjoeyitsestelle]

Fever since Monday- no other obvious symptoms. Took to A&E on Thursday as started shaking and grunting when temp spiked. Told probably a virus and sent home and to bring back if he still has a fever in 4 days. No bloods or tests done.

Took him back Saturday as I just knew he wasn't ok. Made them do bloods, chest X-ray and urine sample.
His CRP was 270! He was admitted and thought was probably a bacterial infection so blood cultures sent off and given a dose of antibiotics.
Didn't improve so doctor did a lumbar puncture to rule out the '10%' chance it was meningitis...

And it is. My poor baby has meningitis. He's 11 months old and I'm so so lost right now. They think it's bacterial but appears to be somewhat mild as the white blood cell count was 8.

I don't really know what all this means. As all I hear and think of are horror stories.

How do people cope with this? I can't sleep or think straight. And I miss my daughter at home.

Just read through the thread, I'm sorry your family are having to go through this. I don't have anything else to say other than I hope your little boy makes a full recovery, take care x

Thinking of you, OP. I hope you get good news soon.

Oh I’m thinking of you too op.

How is he this evening?

@TheLovleyChebbyMcGee

Yeah they said that ☹️ tho they said they maybe see 1 case a year, but there were 3 on the ward when he was first diagnosed which is weird isn't it. They've said it wasn't hib so not a vaccine issue said it was a different strain.

Nothing happened today. Hopefully more of a plan tomorrow 🤞🏼

Hope tomorrow brings more positive developments and your baby (and you) get some decent rest tonight.

I know how stressful and upsetting it is being in hospital with a baby. My heart goes out to you
💐

@heyjoeyitsestelle I have just read your whole thread and I am sending love to you all and I have everything crossed you will be home again soon Xxx

Poor little darling is having such a rough time. Sending you positive thoughts and love- it must be taking its toll on you and your family too.

I hope they move fast and start acting quickly. You must be exhausted OP. I have had my fair share of emergencies with my son. Make sure someone relieves you from the bedside so you can do simple things like take a shower, walk away and make phone calls, drink a coffee...

I hope today brings some positive news. Kids are amazing for suddenly rallying and tuning corners xxx

He's picked up again - they think he was just unfortunate and picked up another different viral infection. It's just guess work tho I suppose, they threw some super strong antibiotics at him when he come in on Sunday which obviously wouldn't do anything for a virus so who knows. I think they're allowing home leave tonight and tomorrow as it's his birthday! And keeping an eye on his bloods then see how he gets on over the weekend.

Goodness what a rollercoaster for you

Happy birthday to your brave DS for tomorrow

@heyjoeyitsestelle 3 cases?! Wow, that's really strange, I bet public health will be going through things with a fine tooth comb to see if the 3 different bacteria are the same strain.

I know that won't help your DS now, But I really hope things are getting better for you all, it must be so difficult for you.

@TheLovleyChebbyMcGee
Maybe you can help me with understand this latest blip.
So they swabbed his nose and discovered enterovirus. He also has a really gross rash on his legs and arms that's now going scabby.
So they've sent off a PCR test to another lab.
This came back this afternoon and they seems surprised it was low? And are re running the test- why would this be?
Is this because they were expecting a higher result as his fever was high and also his CRP?

I'm sorry I can't help. I am lurking and wishing him well, glad he has picked up. Happy birthday to him x

I’m not clinical, but I do work in children’s medicine and have a child with health issues so I can imagine how scary this is for you. Enterovirus is the most common cause of aseptic meningitis so I would think that’s been there all along and triggered the others, rather than this being a separate thing. Recovery for small children often has peaks and troughs and this may be just a blip. The rash could also be lots of things - post-viral, a reaction to meds, an auto-immune reaction - as far as you can, try not to worry because this doesn’t necessarily mean it’s something else - this could still be the tail end of the first thing and he’s still getting better.

Happy birthday to your little boy! X

Yup @FenellaMaxwell is right and got there first. Viral meningitis is the most common type of meningitis too so please try not to worry, but I know it's your job as a mum eh?!!

@heyjoeyitsestelle

How are you all today? Were you able to take him home last night? It’s not a fun way to spend your first birthday, but pretty memorable for his 18th birthday! 🙄

Any further results yet?

It’s so scary when they’re so small, but in the other hand they bounce back so quickly at that age too x

@AmelieTaylor
He pulled his line out yesterday so we were there today but came home in the afternoon. So had a lovely birthday tea with family.
They're pretty sure it's this enterovirus that's possibly hand foot and mouth (the rash) - tho the rash doesn't appear HFM typical to me.

He was swabbed for virus's on admission start of jan and had none at the time, just the bacterial infection. Then a week later swabbed again and had adenovirus. And then obviously this new one over the weekend.

We're home and they've kept the bed open for us over the weekend so we don't have to go back through A&E if anything happens again. Then back Monday for bloods to check CRP etc and hopefully discharged for good! 🤞🏼

Fingers crossed for you!!

Little bugger 🤣but I’m glad they were able to re do it & send you home in time for his birthday AT 🎂😊

Are you able to cover it with another layer (presumably he already has a hospital issued cover for it?) such as a chopped off pair of babies tights?

🤞🏼You have a nice weekend at home & he’s in the oath to recovery xx

Oath...path 🙄

Is he still home?

@StealthPolarBear
Yeah he's home, hopefully until Monday all being well. Then bloods and a check over Monday and hopefully discharged FOR GOOD 🤞🏼

That's brilliant. Hoping Monday goes smoothly. Thank you for the update :o