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.

Ive no advice. But i wanted to say, that im thinking of you and your son. Im sending postive thoughts and i hope he recovers ok. Xxx

I’m so sorry. He’s in the right place. I have a friend who went through this and it was awful but his daughter is fine now. Well done for trusting your instincts and pushing when you knew something was wrong. Thinking of you.

Hi, I am heartbroken for you. I was an intensive care nurse for many years.
On the positive side, treatments are much improved over the years.
It won't help, I know, but it not unknown to be sent home initially as it has not been diagnosed.
Let us hope that this means it is caught in time as will not be too aggressive.
Talk to people and don't be afraid to cry. Talk to parents in the relatives rooms. Just offloading a little will help. Talk to the doctors and nurses. They know that you may not fully understand. You will feel lost and in despair. When you think of a question write it down. Make a list and ask. Write down the answers.
Rest assured my thoughts are with you, as I am sure will anyone's who have read this heartbreaking question. I hope for a positive outcome for you and your baby.
raven999

So sorry OP no advice, but well done for pushing for the tests and everything crossed for your LO!

My daughter had meningitis at 6 months old I lived in hospital with her while family looked after other 2 children. Hands down scariest time of my life as soon as I heard the word meningitis I thought the worst. Missed my other children like crazy but my baby needed me more. I was sent out of the room while she had a lumbar puncture in case I got upset but she didn’t even flinch she was so unwell. After 6 days she was up laughing and dancing absolutely perfect and has made a complete recovery. Hang in there he is in the right place.

Well done for trusting your instincts and taking him back, he's in the right place. I had meningitis at 25 and while it was awful, I've suffered no long term ill effects. Hope your little one is ok & you're practicing good self care

Well done for taking him. My now 4 year old had sepsis and suspected meningitis. It was horrific. But you are in the right place now. Am sending you strength and courage and hope. Just keep on going. X

He's definitely in the right place. Good on you for sticking to your guns and making them believe you.

Another hand hold here, stay strong, you have no choice obviously(!).

X

Well done for following your gut. You've done everything you can. Your little one is in the best possible place.

Hand holding.
Deep breaths, keep yourself hydrated
Can someone drop a few things in for you? If so, a phone charger, some healthy snacks and a notebook to write things in might be good requests

Hope he is feeling better soon

Another hand hold here for you OP, you're doing great for your DS, you absolutely did the right thing by trusting your instinct

Sounds like you've got him treated early. All you can do is be there for him and make sure you look after yourself! Good luck to your little one.

Did they say what strain of meningitis?

Massive well done for pushing and following your instincts. Sending your son much strength and betterment. Have you got everything you need - drinks, snacks for when you can manage a bite or two, phone charger etc.? And if not call everyone you know to help - I've happily dropped things at hospital before for friends/neighbours with a child in hospital.

Thinking of you OP well done for trusting your instincts and getting him the help he needs. DP had meningitis as a weeks old baby and has suffered no lasting damage and I'm sure care has moved on significantly from a quarter century ago.

Sending wishes for the absolute best outcome for your DS OP

My newborn spent 4 days in hospital last week as she had a fever and they suspected menegitis/sepsis. We were lucky it turned out to be viral.
I am so, so sorry you are going through this. I wouldn’t wish the testing on anyone let alone even having the illness.
Sending hugs and hope for a quick and full recovery x

Omg you poor thing. I can't imagine what you are going through. I have an 11 month old DD and was in tears the other week as she was poorly with a bad cough and cold. If I was in your shoes i'd be in pieces. Good for you for trusting your gut and making sue they did the tests. I have my fingers and toes crossed for you, I really hope you DS picks up and is home and well soon xxxxxxxxxx

Thanks everyone!
Blood cultures have come back with a bacteria haemophilus influenzae - which is vaccinated against so god knows how that's happened.

The lumbar puncture came back positive for white blood cells but they said it wasn't really high which is good- waiting for further results from that but as he'd already had antibiotics they might not get the results or something as it could have already killed the bug in the csf.

@Tonz that makes me feel better. I hope he's laughing and happy in a few days time.

Just something you never think is gonna happen to your own kids isn't it.

My son had bacterial mengitis at 3 months. His white cells were at nothing as he was a premie and just out of nicu.
Its the hardest thing i ve ever gone through....hes now 10 and fantastic...best of luck. I m thinking of you.

It doesn't have to be terrible. You are in the right place , keep questioning as you have done, and look after you.

Is that what the hib vaccine is for ? They have a couple of those too dont they it must be rare for it not to work ??

Had he had his hib vaccine or is he too young I think they’ve changed the schedule I’m sure my kids has that one under a tear but looks like it’s a 12 months now
Hope your ds is ok OP xx

I really hope he is up and laughing soon too. Stay strong babies are a lot tougher than we think. I know it’s terrifying I’ve been there myself but she came out the other end with no lasting damage. Il always be grateful to the doctors and nurses at sick kids even the cleaners were amazed at how she bounced back. Please keep us all updated I’d love to hear all as well with your baby

It is what the hib vaccine is for yes. He's had it and is due a booster in a few weeks when he turns one. They've asked for his red book to check but I know he's had them even if it does make me doubt myself.

They also said I might get a call from the vaccine people (can't remember what they were called) as they had to inform them.

Waiting for tests to come back to say which strain it is. I really don't understand how he got it if he's vaccinated. But jeez isn't it a good job they do (when it works obviously)

He's had his antibiotics today and they're every 24 hours. He's unsettled and unhappy and not eating anything, but thankfully he is drinking enough milk at the moment.