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Original poster

Neonatal meningitis - advice needed

10 replies

Hfb1980 · 02/02/2014 13:07

Hello, advice needed regarding neonatal meningitis.
My. 7 week old , who was 5 weeks early has meningitis (viral strain of enterovirus confirmed, awaiting bacterial results). He has over come the worst, he stopped breathing and continued to do so hours before he was ventilated for. 5 days .
He appears to be looking at light (sometimes ), but is not following any movement in front of him, even if it is very close . I am very concerned about blindness. & brain damage .
Had anyone else been in a similar situation. & can you advise me on things I need to be looking out for .
Thanks xx

OP posts:
ImNotReallyHere · 02/02/2014 13:56

Really sorry to hear that. Can't offer any advice but my DD also contracted meningitis at 1 day old - she too was 6 weeks early. It was a horrible time but she made a full recovery and is now a healthy 6 yr old. I had concerns about hearing as she failed lots of tests but has now been given the all clear and turns out it was just childhood gunky ears which is v common.

Original poster
Hfb1980 · 02/02/2014 15:00

Ah thanks for your reply, glad all turned out well for you. It's been a horrendous week, but he is getting better every day :)

OP posts:
oricella · 02/02/2014 17:09

Hi there, another one who's been through this; my DD also was 7 weeks old, pneumococcal and on a ventilator for the best part of 3 days. Difficult to give advice though - the waiting game is awful and the not knowing while they do their growing up is hard. We had direct concerns about hearing and muscle tone, which all has worked out well; and then wondered for ages about other developmental issues. I think 4 years on we can now safely say that she's come out unscathed - apart from maybe showing a fighting spirit that could occasionally do with toning down.

My main advice would be for yourselves - in the immediateness of it all you kind of live on adrenaline, but the experience can knock you out weeks, months and still years down the line. So don't forget yourselves and acknowledge the shock you've been through and try and take some time out where you can. Wishing you and DS all the best

VivaLeBeaver · 02/02/2014 17:14

Hi,

A friend of mine her little premature girl got meningitis and stopped breathing and had to be ventilated. She was told her girl probably wouldn't ever walk or talk. She's now 3yo and does walk and talk. She's had developmental delay and has mild cerebal palsy, is clumsy and trips up, etc. But she's a lovely girl who's exceeded all expectations.

Stay positive, I hope your ds is better soon.

QOD · 02/02/2014 17:35

Oh poor little DS, and you, try to rest and we are all rooting for him!

Original poster
Hfb1980 · 02/02/2014 17:57

Thank you so much :) this waiting game is hell wouldn't wish it in anyone. It's great to hear some positive outcomes, I think we are lucky that's he's still here...I know that many people are not so lucky. He is looking amazingly well for a baby that had been through all this and is starting to feed like a trooper xx

OP posts:
crispycronut · 02/02/2014 18:10

Ds was born nearly 9 weeks early with bacterial meningitis and sepsis (i had strep B).

It was all a bit of a nightmare so i dont remember much because we went on auto pilot but they had him on anti Bs for 19 days in total even though we were told initially it would be 14 days but it was complicated by the fact he had Gram rods negative which apparently is not good.

He had lots of brain scans which did pick up his IVH bleeds and hearing tests which showed he didnt have any loss which we knew was very lucky considering what his little body went through.

He was discharged after 5 weeks, still tiny but perfect.

He has since been diagnosed with Hemi, language disorder and is being assessed for dyspraxia this week but he is lovely, funny and a real joy.

The hospital gave us no prognosis and we have since been told its because they really dont have a clue what the outcome will be but as a mum of a prem baby you will be watching your Ds like a hawk anyway!

Before they discharge you, make sure they book you in with a paed for a follow up review in a few months just so you can start jotting down any concerns if you have them rather than having to go to your G.P for referral. It just speeds things up as the system can be slow.

I hope he's better soon x

Original poster
Hfb1980 · 02/02/2014 18:23

Yes I will ensure we have follow up , thanks for the advice. My 4 year old has autistic spectrum disorder, as parents we had at the back of out minds that our 3rd baby may also be on the spectrum as it's more prevelent in boys. I suppose now I feel he is at more of a disadvantage than before with now having had meningitis.
Think I need to try and stop over worrying and take things as they come as they are out of my hands , it's very difficult though!
It's comforting to hear other peoples stories , I think mumsnet is a brilliant support group for any mum . Xx

OP posts:
MoreBeta · 02/02/2014 18:35

I had bacterial meningitis as a new born baby. I am 50 now.

Have no advice except it took me about 6 months to get to a normal weight. It is early days yet and there really is nothing you can tell at this stage. He has been very very ill and your doctors will be taking very good care of DS. Time is a great healer.

Keep yourself well and try not to keep 'looking for signs'.

beautifulgirls · 02/02/2014 20:12

Please do get in touch with the meningitis research foundation - they have a vast amount of information and are a great source of support too. Glad your baby is over the worst and hope everything turns out well from here.

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