I am the mum of an 11 month old who has been in hospital for 3 weeks now. He had pneumococcal meningitis/ septicaemia.
He is still on regular antibiotics and pain relief and we have been told there is brain damage.
Whilst being in hospital he has contracts two other cold/flu like viruses and entrovirus (which I have been told is viral meningitis).
I appreciate his immune system will be weak but I am worried, will he fully recovery and how long will it take?
He also cannot hold his head up properly yet or sit up. He seems to have a stiff neck and is in constant pain. It breaks my heart again and again seeing him like this.
Has anyone else had anything similar happen to them (when younger) or your kids?
Many thanks
Worried Mum
Written by
RHussain08
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My son was 20 days old when he got bacterial meningitis, you have my sympathy, it's terribly scary.
It's impossible to try and predict recovery time, it's literally day by day.
There's lots of people I have spoke to with young babies who have had the same issues regarding holding up heads and motor movements in general, most of the time it's temporary, his body is going through so much right now, it needs time time time. Has he had CT scans?
They told me with Charlie the damage will only manifest over time if there is any. Because he was so tiny, he had no head control so we were guessing with him. At first he couldn't even hold his head up enough to breastfeed. And after 3 weeks he guzzling away like mad. Charlie had to have a line put in that started from his foot and went up to his heart. Surrendering him for surgery tore me up inside.
Don't dwell too much over what will happen down the line, just concentrate on now, and be there for him. 😄
Are you in the UK?
It was 2 months before we left the hospital he had daily anti biotic infusions after a week in isolation and then first things that happened were vision and hearing tests. We won't know of any learning problems until his school years.
We don't really care what hand we're dealt because we've got him and he's alive and happy and we're so thankful for that.
Your in the thick of it now hun, and I feel your pain. Sounds like your baby is a fighter 😊
Keep us updated with how he is getting on, there's plenty of us on here who know just what your going through 💜😘😘😘
Thank you for your reply. I am so sorry to hear that your little one went through this at such a young delicate age. I am pleased to hear that your baby finally left the hospital!
How old is your baby now?
My little fighter is doing ok-ish. We have been told the bacterial meningitis should have been eliminated by now however he spikes temperatures everyday and we can't understand why. The doctors keep saying 'it could be because of the viruses he has caught whilst being here' it's so frustrating not knowing why.
Before he got meningitis he would have 3 meals and breastfeed in between. He was crawling, pulling himself up and walking whilst holding onto the sofa.
He now has an ng tube and I am worried will he be able to eat, sit,stand etc all the things we take for granted. The docs and physio are happy with his progress.
He still cannot hold his head up without support. His right arm is weak. He is taking anti-seizure medication too..
I can't wait for this nightmare to be over so I can take my boy home
What was your little ones immune system like after you left the hospital?
So so sorry, I caught this disease at 22, and from an adults perspective it was tough to go through.
I spent 6 months in hospital, a month in a coma, two heart attacks and re-suss twice. Pneumonia and two collapsed lungs, life support for 10 days and 7 full body blood transfusions, I had too learn how too eat read walk talk and even hold my own head weight.
So I completely get this desease down to a T.
My parents were told there was brain damage but until I woke they wouldn't know.
I ended up needing a kidney transplant and epilepsy, which is now controlled
It's now a case of letting the docs do there stuff, and you stay strong buddy.
Keep me posted, I'm 15 yrs down the line now and it changed my life for the better in a weird way. I get to talk to ppl like you 👍🏼
Wow I am so so sorry to hear that you went through such a difficult time.
My poor boy is just a baby and been through so much.. as adults I find a migraine excruciatingly, I cannot imagine how it must feel to go through meningitis (my little one had bacterial and now has viral all in the space of 3 weeks!)
He stopped breathing on the first day and was also in an induced coma. He woke up after 7 days. He is making good/slow progress.
I'm just curious and anxious as to how long it will take before he can crawl/stand etc
We have seen his MRI scans and have been shown the brain damage. They don't know how this will affect him as yet although he does have a weak right arm
Are you still taking medication for epilepsy? (My boy is given medication for it too).
Also, what was your immune system like once you left the hospital?
Took me about 3 months to learn to walk correctly. I'd swing my hip instead of bending my knee. As for your sins weak arm, patience and repeat, it's just learning it again I had memories of me walking and running and talking so I knew I could do it, so that helped my recovery
You say he is out of his coma now, that's good to hear how is he now
Immune system was shot as I ended up with kidney failure and a transplant. I have no immune system now or very little as I keep it suppressed so my kidney won't reject but I made a good recovery after all the major events that followed my illness Keep me posted 👍🏼
Also, how long did it take you approximately to learn how to eat/walk etc again? That makes me so sad and I'm so sorry you went though this.. it's an awful illness and I wish it on no one! X
Hi, my son was spiking temps too even after the month of IV anti biotic. They said the same me, it's the viruses he had picked up while he was there. His immune system had taken a hammering and he was picking up everything. Try not to worry too much sweetness.
Are you still producing milk? When Charlie was too weak to feed, I would still express,and I was allowed to go home for an hour to see my other children and he had a feed through a bottle in that hour. and luckily when he came out of it he went straight back to feeding.
He is 1 year now. He still having follow up, he is the same as your little boy, walking around the furniture. They have said he is small for his age, only on the 9th centile. This could be just coincidence or delayed growth because of his illness.
Omg hun I know it's a nightmare. It really is. I had a week not being able to see my other kids, which tore them and me apart. It was literally like a bomb had gone off in our lives.
I've got some PTSD from what we went though, because I struggle still very much with guilt, because I feel like I didn't protect him and I let something awful get into his system. Charlies strain was ecoli strain, and it was never determined where it came from, so as a result of that, I am very conscious of germs and sanitise my hands a million times a day. Simply because I'm terrified it could happen again.
Charlie went back in to the CAT ward with seizures twice following our discharge Which were Luckily benign, and stopped soon after.
Your right, it's like pressing rewind on a tape, all the the things you take for granted. Walking, eating, communicating. Everything you take for granted. Another lady I speak with regularly has a daughter in a similar position, she had to learn again how to use basic motor skills, but she did, and she's thriving now! 😊 were just taking each milestone as it comes.
it might not feel like it now, but kids are very resilient, and they bounce back even from the brink.
Were were very lucky with charlie. We were only hours away from losing him. My husband doesn't have any religion but even he found himself saying little prayers during that time.
Your doing a great job hun just keep soldiering on 💪❤️
Little steps, each day, with no expectations. That's the way I handled it. I'm here any time you need to talk 😘
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