4 week old DS has meningitis.. positive stories to keep me afloat please?

[miniworry]

My 4 week old DS has been diagnosed with meningitis after a temperature spike of 39 and my world feels like it's been turned upside down.

No other meningitis symptoms and it was only thanks to a very thorough consultant who ordered a lumbar puncture 'to just rule it out' that meningitis was found. We are currently still waiting to find out whether he has bacterial or viral meningitis as they have to grow the cultures in the lab which takes 48 hours but he has been on iv antibiotics since Monday for bacterial meningitis whilst they wait for the results.

I feel frozen with fear and I've barely ate or slept since Monday. Please can anyone share some positive stories to help me get through these darkest hours whilst we wait for the results? I know that viral is the least serious but doctors believe we are likely looking at bacterial due to how high his white cell count was.

Thanks so much xx

That is such lovely news! I've been checking back and hoping for you.

You will be incredibly anxious. I've got grandma ptsd from my grandson being so tiny. I can't think back to that day nor look at photos of him so tiny in NICU.
But you will get through. It's early days but using that cliche- time is a healer.

So pleased to see your update.
A bit of a rocky start but suddenly he'll be 16 and a strapping lad!

Oh what wonderful news! So pleased for you, your DS and your little family miniworry

You’ve been through a very stressful time and it’s going to be with you forever. But I promise over time, this anxiety will lessen. It would be strange if you weren’t feeling massively affected by this. It is such a desperate, weird and extreme situation, so please be kind to yourself about how you’re feeling.

For now, just appreciate the freedom of being at home, get him fully better and go at your own pace.

Come back on here to chat anytime 💐

It’s normal to be and feel beyond messed up about this. It takes time.

Honestly, I didn’t exhale until my son was 8 months old and I saw him eat three dinner rolls in a row. One day, you will look at him and exhale. I promise.

Hi @miniworry, I know this thread is over a year old but my 4 week old DD has just been diagnosed with meningitis. We are waiting on blood culture results tomorrow which should tell us if it’s bacterial or viral, they are leaning more towards viral which I’m really hoping it is as I know it’s less serious. I found your thread when googling and the positive stories on here have really helped calmed my nerves. I wondered how your DS is doing now and if there has been any long term impacts of the meningitis? I’m so worried for my little girl

My youngest son caught bacterial meningitis when 5 months old. We had just moved house 3 weeks before and had only just registered with a doctor but luckily one of them came to the house and spotted the symptoms - enlarged soft spot, disliking light or noises, vomiting, not moving much. I had two other pre schoolers and no car which is why a house visit was made.

The doctor took one look at my baby, phoned the hospital and an ambulance then went next door to ask my neighbour to look after the children while I went off in the ambulance.

I will never forget the sight of a trolly waiting for us in A&E which took my baby off me and rushed away down the corridor to hook him up to a drip and give him a cocktail of antibiotics while they waited for the results of the lumbar puncture.

All was well though, they had “ guessed” the correct type of meningitis and got antibiotics in him very quickly. After three weeks in isolation he recovered enough to go home with no lasting consequences although we were under a paediatrician until he was 5 to check his development.

He is now a strapping 38 year old who is getting married next year! It was very scary at the time and without the help of new neighbours and my family, I don’t think I would have got through it. I was introduced to a new drink my my mum in her care packages to me, a tin of ready mixed gin and tonic which I enjoyed every evening while I was also in isolation with him.

@Biscuitsandtea22 oh my heart broke for you reading this as I can only imagine the fear you are feeling right now.

My DS is 20 months now and he's just the light of our lives. He is happy, cheeky and has (from what we know so far) no lasting impact following on from the meningitis. He has met all his milestones so far, including walking and talking. The only thing he did develop was a cows milk allergy which they think was due to being pumped with antibiotics for two weeks at such a young age.

Please read this thread over and over as it honestly got me through those tough nights. You are doing amazing just being there for your darling baby and in a few months this will all be just a bad distant memory.

Please feel free to message me at any time if you need to chat xx

@Biscuitsandtea22 I should add that we had a follow up hearing test and also paedrictian appointment about 6 months after. Please ensure they offer you the follow up hearing test even if they say it's just viral. If you're anything like me I felt like I would have always 'wondered' if all was ok after and I wanted it checked xx

Thank you so much for your kind reply. I’m so pleased to hear your DS is doing well now and doesn’t seem to have any lasting impacts. That really does make me feel better.

I have a 2 year old DS at home and it’s breaking my heart being away from him but I know my DD needs me more right now. I’m breastfeeding too so I can’t leave her so it’s been really hard, I feel like I want to split myself in two to be with them both 😢

Thanks for the advice about the hearing test, I will definitely make sure I do that. The HV has already been in touch as it must have flagged on their system that she’d been admitted to hospital so they are aware of the diagnosis too xx

@Biscuitsandtea22 I know the wait for the blood culture results can feel like torture- ours came back positive for enterovirus which was viral but it also came back with some small growth of bacteria, which meant they could never say for 100% that it wasn't bacterial meningitis hence the need for the full 14 days of antibiotics. I'm saying that because I know how much I pinned my hopes on counting the days until the cultures would be back to feel better and when I didn't get the answers I hoped I broke all over again. But a really kind doctor told me that if baby is showing signs of improvement then they're on the right treatement. Is your daughter on iv antibiotics whilst they wait?

I also feel your pain with your other child at home- I also had a 3 year old at home and I felt like I was failing as a mummy not seeing her. My husband and I did swap for a couple of hours in the day by about day 7 once my son was showing signs of being more stable, but I would always spend the nights there.

Sending you so much love ❤️ and here if I can help in any way, even if it's just providing a listening ear xx

My nephew had meningitis at 3 days old. Turned out to be viral but he had antibiotics given anyway. He's now 16 years old, and nearly 6 ft and a great track runner. He's also very bright and wants to study architecture in college after his Leaving Cert!

It really is, they’ve said it should be tomorrow evening we get the results but it feels like time is going so slowly. Sorry to hear that about your little boy but I’m glad you had a kind doctor. Yes she’s been on IV antibiotics and antivirals since Friday as her temp kept spiking at 39.5. But the doctor today said the antivirals can damage their kidneys so that’s another worry 😓

It’s so hard being away from my son, he’s not really old enough to understand what’s going on either and is missing his mummy. The guilt is so intense and I just can’t stop crying. Thank you for being so kind, you’ve helped me so much xx

That’s really positive, thank you. I’m so glad to hear your nephew came through it ok, especially with being so young!

@Biscuitsandtea22 I get how awful it must feel to know that he's missing his mummy because he's too young to understand, but just remember he is also too young to be able to ever remember this time, so sometime soon this will all be a scary distant memory ❤️ do keep us updated when you get the culture results back. How's your daughter's temperature now, is she more stable?

I found mumsnet an amazing place for some company and a listening ear at 2/3am when I just couldn't sleep because I was so worried so do try and reach out if you need!

No experience but I just wanted to pop in and send you and your baby my best wishes for a speedy recovery, and my most positive vibes x

@Biscuitsandtea22 did you get the culture results back?

Sorry it’s taken me a couple of days to reply. We did get the results and it turned out to be bacterial meningitis caused by enterovirus, so luckily one of the less serious types. We are back home now and my daughter is doing really well, it’s amazing how strong and resilient they can be at only a few weeks old! We have a follow up in 3 months time and will obviously keep a close eye on her going forward but the doctor was hopeful there won’t be any lasting impacts. I’m just so grateful because I know it could have been a lot more serious and feel very lucky she’s ok. I never want to go through anything like that again!

Thanks again for your replies, it helped me a lot when I was feeling scared and lonely in hospital. Friends and family did their best to reassure me but it really helped to speak to someone who had been through it first hand xx