Meningitis awareness - your thoughts please

[oricella]

It's coming up to a year since we nearly lost DD2 to meningitis. We were lucky and she pulled through and at nearly 13 months has no discernible side effects.

One of the things that upset me is that, although I considered myself to be pretty well aware of the dangers, the thought of meningitis did not cross my mind once until the consultant in the local hospital diagnosed it. It probably didn't help that she had a high fever a week earlier and we'd been sent home with calpol, after which she improved - but I still felt gutted that this so called mothers instinct didn't work. I was very much thinking along the lines that she was still feeding, still having wet nappies and would calm down when I held her, so it wouldn't be too serious. Literally before I knew it she was on life support in a PICU 200 km down the road.

We're seeing the HV next week and I'd like to talk to them about improving awareness. I don't think they failed - but I do think that in those first months after giving birth the info may become snowed under and crowded out. It'd be helpful to know your first associations with meningitis & if you think you know enough to recognise it if it happens. And can you recall when and how HV broached the subject with you? Thanks

[StealthPolarBear]

so glad your DD is OK
HV has never mentioned it to me as far as I know
I almost dies from meningitis at the age of 18 - I passed the "glass test" and I want to scream when this is given as a reliable indictor, surely lots of people must get false reassurance??

[oricella]

Thanks SPB - that's exactly one of my worries; it's far too easy to think meningitis = rash. DD contracted pneumococcal meningitis, which doesn't give you a rash at all. And whilst I think it's good that people know about the glass test, it should come with a massive warning that you can use it to rule meningitis in, you certainly can't use it to rule it out

Glad you're still here too - it must have been terrifying

[anniebear]

I cant remember her ever mentioning it it me, but my girls are 8 now

nearly lost one at 8 months of age due to pneumococcal Meningitis, she was on life support, had a shunt fitted, and suffered brain damage

Meningitis Trust are fab , thye may be able to give you some advice to approach your HV with

Glad your DD is ok xx

[oricella]

Anniebear - so sorry to hear about your daughter. I can only just about start to imagine what it must have been like for all of you - and I confess I can not really imagine what you will still be dealing with today.

I really like the info from the meningitis trust and will try and get HV to distribute their symptom cards, rather than the ones they do at the moment.

Thanks for responding

[beautifulgirls]

No-one talked it through with me with any of my 3 children - I may have had a leaflet, but it clearly didn't have that much effect on me....mumsnet did though....

On Sunday night just gone, my 5 week old baby girl was running a temperature. I ummed and ahhed about what I should do - was it worth disturbing the doctor? I came on mumsnet and had a quick look to see what other mums did and came across this thread. I decided I had better call to be safe, so rang the out of hours GP - who sent us straight to A&E. From there my daughter was admitted for 48hrs and checked thoroughly including a lumbar puncture. Thankfully so far all results have been negative and she is home, but still getting iv antibiotics. They have no explanation for why she got a fever, but I am relieved to know that she has been checked out, and that despite my ignorance about how potentially serious this could have been, the outcome here is good. We are still waiting on extended cultures, but fingers crossed those are negative.

Anyway, thank you Oricella for posting. You have already made a difference even if not how/where you expected.

[oricella]

Hi beautifulgirls - sorry not to reply sooner & thank you so much for your post. How is your little girl now? So glad to hear that your DD was looked after so well. Hope she's doing well now & that all the cultures were negative.

We saw the HV this week, and we discussed that they really do no more than 'discreetly tucking a leaflet in the back of the red book'. But she put me in touch with the person higher up responsible for information provision and some day soon I think we'll have a discussion on what we can do to improve awareness. It sounded like she was willing to listen, so that's a good thing - nothing 'discreet' about meningitis as far as I'm concerned...

[nowwearefour]

not a dc but my father contracted pneomococcal mengigitis almost exactly 2 years ago. once again, no rash and flulike symptoms. it took me a few days to persuade my mum to contact the medics and she rang 999 when he had diarrheoa and seemed to be incoherent. Fortunately the medics caught on quickly to what it might be and he was treated immediately, even before diagnosis. they said he was brought in quickly but still lost the use of one ear completely. terrible reall ybut we feel so lucky to still have him. so there is just no taking any chances with even flu or cold llike symptoms.

[wheresthesunshine]

We had the pneomococcal mengigitis scare when DS was 10 mths. My mothers instinct failed too, but DH wanted to go to AandE. Cultures came back inconclusive (were contaminated) but they suspected a virus which immitated meningitis. Again, no rash.
Have often thought myself about asking to do a talk to new mothers about the symptoms in babies.

[chubbymummy]

My friends lost their 18 month old son to Meningitis and he had no rash at all. Meningitis UK are currently looking into a campaign to raise awareness and are on the lookout for people who's children did not have a rash to tell their stories as part of the campaign.
Glad your DD pulled through!