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Meningitis Now
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Baby suffered viral meningitis

Hi everyone. So my poor 4 month old baby boy was diagnosed with viral meningitis last week. We spent 4 days inhospital and then was discharged as he started to feel lots better. However he is still very up and down. I understand that it’s still only early days but some days he is very happy and like nothing has been wrong with him and then other days he is very whingey and I don’t know why he’s crying ?! The rubbish thing is he’s only 4 months old so obviously he can’t tell me what’s wrong 😢.

Also I feel i am really struggling with my emotions with it all. I keep just crying and thinking about the whole trauma of what he went through. People think I’m being silly because after all ‘ it was only viral meningitis and could have been worse and could have been bacterial’ which I totally understand. Things could have been worse. But thankfully he didn’t have bacterial meningitis but still he was SO SO poorly and I did think I was going to lose him at one point. The whole ordeal of being rushed in an ambulance to the hospital to the doctors saying meningitis to him having to have a lumbar puncture. I just keep reliving the whole events over in my head and I keep getting emotional :(. How will I know if there are any long lasting affects because like I said he’s only 4 months old so he can’t tell me if he’s suffering from headaches etc ?!

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Hi Debbie

So sorry to hear about your little one - I feel your emotional pain. It must be so hard to not have him tell you what’s hurting.

My daughter is 9 and underwent brain surgery for her chiari malformation and syringomyelia

9 months ago and 3 weeks later she was diagnosed with viral meningitis. She was so ill !

She was obviously recovering from the op and so was very unwell anyway but after lumbar punctures it was confirmed as VM.

Although it has been a few months now she suffers terribly with migraines and has days when she just doesn’t even want to get up as she aches too much.

It’s so hard as on good days, to look at, she looks so fit and healthy but bad days are awful.

She’s on prevention medication and Triptans should she have an onset of a migraine but sometimes she just cry’s as she just “hurts”, this can be all over , legs /arms etc.

If she’s been too active it will drain her like a battery after a while and she will be miserable for 3/4 days.

I get the frustration of people not understanding and seeing a “healthy child” but not understanding what trauma they’ve been through.

Her consultant has been very good as have the school as she has missed big chunks-

My advice to you is to keep pushing for medical support , don’t let it go and demand to see someone who’s willing to listen to you. keep a daily diary of how he is and if any thing triggers it off as this will be help hugely !!

Has he had a hearing / sight test since the VM ?as I know my daughter has been left with heightened sensitivity to noise and can’t stand being anywhere too noisy.

I hope it gets better for you and keep me posted on how he’s doing

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Hi thank you so much for your reply. No he hasn’t seen anyone yet to check his hearing or sight but the consultant said last week he will want to see him in about 2-3 months time to check there’s no lasting affects. So I’ll just have to wait til then I suppose. Definitely going to keep my eye on him and just monitor how he is. Rubbish thing is he can’t tell me if he has a headache :(.

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Bless him, yeah that’s the difficult part with healthy babies let alone ones who’s suffered VM !!

Definitely make sure you keep a diary of everything and triggers that may effect him or things he’s done that distress him or make him become unwell. Medical staff constantly ask me when, how and where before proceeding with anything and it’s good for you to keep records as there maybe patterns that you start to notice that you can alter or adjust to make him more comfortable.

Good luck with everything and hope he’s back to a healthy happy baby real soon x

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My son had Viral meningitis at 10 weeks old, it took him a while but he got back to normal. 4 months ties in with a developmental leap and possibly teething so he has a lot going on.

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Yes he is definitely teething also at the mo x

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Oh honey, I'm so sorry you AND your little one are in distress. I'm certain you would know if he was having an awful headache. They can't talk, but they can express plenty. You can only do what you can do. You're a great parent. Try not to worry too much and 🤞🤞🤞🤞 it's a one time thing!

Love and live.

💜💜💜

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Awww thank you. Your message really touched my heart ❤️ Xx

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Hi.

My little boy was just 2 weeks old when he got BM and I still suffer from PTSD even to this day 2 years later. I still feel and hear the terror of the hospital and the words the doctors were telling us. I was isolated from my husband and other small sons for a week. He had to have a six week course of antibiotic infusion through a line from his foot to his heart. Surrendering him to surgery for that is the single hardest thing I’ve ever dealt with. His veins couldn’t stay up and he was covered in holes from the multiple attempts of trying to cannulate him. Truly the darkest days of my life. And his no doubt. It sounds like you might have a bit of PTSD yourself. I reached out on here and got talking to a few members who had babies who had been through the same as Charlie. It helps to talk it really does. My sons just had a round of follow up tests and he’s behind with speech and had just been referred to audiologists and podiatrists for ballerina walking, as anyone who has had meningitis is at greater risk of being on the autistic spectrum, depending on which parts of the brain the meningitis affected. I remember last year he was a bit like your baby, fine one day and upset for no reason the next, but I also remember my other two sons going through the same, so it’s not necessarily down the Illness. He suffered a lot with silent reflux that had us back in the hospital as he was having benign seizures linked to the reflux rather than the meningitis. Try not to have too many expectations of your baby, and just take each day at a time. They told me Charlie would tire easily, which he did, try not to sit and relieve it over again which is what I did and still do. I know it’s easier said than done. The whole experience was pure hell. Please feel free to send me a DM if you want to talk, I kept a journal of Charlie’s development so I might be able to reassure you milestone wise how Charlie was in relation to your little one.most babies come out of it unscathed. He will most likely be absolutely fine. Whatever hand were dealt with charlie, we don’t care because he’s here and he’s healthy. He was lucky enough to be too young to remember, me on the other hand wasn’t. ☹️ Don’t suffer alone Love. There’s lots of us here that have walked in your shoes 💕💕💕😊😊😊

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Awww thank you so so much for your reply. Really heart warming and I am so sorry to hear of your experience :-(. Sounds absolutely awful and I’m sorry you are still suffering now. Hopefully in more time you will get better. Your boy sounds so strong to have fought it off at 2 weeks old ! What a strong little boy you have on your hands :) xxx

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