Hand hold please - lumbar puncture results

[MaidofMuswell]

In hospital with 17 w dd waiting on results of lumbar puncture. Had so many daft anxieties about her development til now following (I think) totally unrelated health issues at birth which I think a calmer mind would have accepted as resolved months back then lovely holiday last week, cheerful giggling baby in bath Saturday night, bit grizzly Sunday but thought teeth, fever and grizzly Sunday night and Monday, GP reassuring Monday afternoon (only rally went in as brother had something else up) then rash visible Monday bath, 111, A and E now children’s ward. Sorry. Horribly long sentence. Husband asleep in chair as I couldn’t bear to be on own last night after so many solo hospital nights at the start so 3yo ds will wake up with grandparents and be discombobulated, wondering whether and at what point I should have come in earlier and if anyone would have listened anyway (GP great and no rash Monday afternoon) and praying that whatever she has we’ve got it soon enough to spare worst long term consequences whatever those even are. Been on two kinds of different IV antibiotics and was up so much with ds Sunday night and now all of last night feel like not taking it in. I love her so so much, this feels unreal which is daft when all my “unreal” concerns felt so real.

Don't beat yourself up. You got her to hospital as soon as there was a visible sign things were wrong.
The waiting is awful.
I sincerely hope the results are in soon and that she is already on the right treatment.

Thank you :) need to sleep but just can’t and am holding her in arms as sort of human swaddle as temp keeps spiking and it’s making her sleep fitfully. Dh snoring and much better at staying calm / compartmentalising and want to be as calm as possible when he wakes up so can keep the mood positive for her and him. Staff so kind here. Fitting the canulas and the LP itself which we had to wait outside for but could hear bloody awful. So so grateful for nhs whilst also wishing hadn’t used it quite so much since January!! Detailed cultures could be 48 hr I think so proper diagnosis final might be Thursday morning.

You did everything you could. You saw the gp, you went in when you needed to and now she’s in the best place. You’re right that cultures will be Thursday most likely, but something aggressive might show sooner. In a way, the longer it takes the better in that respect.

I’ve been there, and I know how scared you are. 3 years ago with a tiny baby (3 weeks) with a uti. I remember the screaming for the lumbar puncture (no no that’s another baby, that’s not your baby - nice try ). And again with a 3yo with mottled blue hands and feet from an undiagnosed tonsillitis (again id been back and forth to the gp, and to the ooh gp). Just try to take it each hour at a time. Ask the staff what’s happening, question the drs. Is she feeding?

And also where in the country are you? Is there anything you need? I know someone will drop off a care package if near their local hospital

A hand hold for you Maido. I’m sure they’re keeping checks that your LO is generally stable. It’s probably a good thing your DH is getting some sleep. He’ll be better placed to look after you later.

Hope everything goes well. 💐

Hand hold from me as well.

You did everything right - every time that doubt creeps into your help distract yourself.

Don’t worry about the 3 year old, they’re fine and looked after. Try and get some sleep, I know it’s near impossible when you’re worried and when you’re in hospital but seriously you NEED sleep, for your sake and your wee ones.

You’re all so lovely thank you! In north London and not far from a McDonald’s and dh Stirring and in need of leg stretch so care package not needed but what a wonderful thought. This is terrifying but people are so kind, the nhs is so good when it has resources to be and, well, McDonald’s. Will keep updates and thank you x

Another hand hold here. My currently snoring 4 year old was in NICU and had to have lumbar puncture when 2 days old. I remember that sick feeling all too well. You're not oin your own x

Hand hold here aswell. My DD had one last week at 3 weeks old. I was in the room when they did the Canula but not the LP. It's terrifying but the NHS is incredible. Talk to the nurses about how you are feeling as well as you LO. They're amazing, knowledgeable and understanding.
You've done the right thing and they're in the best place right now

Xx

OK - you’re not near us anyway, but I’ve seen mumsnet rally before to help with this kind of stuff.

Are you in a big/decent children’s hospital? If it’s very bad and you’re not they might transfer you on to e.g. The Evalina for a PICU bed if needed (unless they have). In my experience the NHS is absolutely wonderful for very poorly babies and they will look after you. You’re already on the IV abx I assume, and you might see her rally today. Has the rash progressed overnight?

Please be kind to yourself. This is going to be tough, especially the aftermath

Sounds like you've had an awful time, OP. I can only imagine how horrible it was to listen to her scream like that. Fingers crossed for you that she's fine.

Bloods suggest that bacterial meningitis unlikely and main candidates being looked at now viral meningitis which I (think) is not too awful or herpes simplex which dr has explained lead to very unpleasant long term things like something called encephalitis which can result in long term brain damage. I’m so scared. I know the next stage is the lumbar puncture results but then if it is herpes I don’t know if they find out whether the treatment she has been having has worked or not or whether it’s wait and see and we go home and have to hope for the best. She’s only just 4 months and already twice having proper discussions about brain damage, this and the bloody stuff when she was born. I can’t pitch my reactions right, maybe I’m catafeophising but her eyes are crossing again this morning and she’s not herself.

I'm sorry to hear that your bubba is poorly. Have they come back to you with any results or have they given you a timeframe at all?

I can't say we've been through this but my son did have seizures when he was a baby and it was terrifying not knowing what was wrong or how to help, plus all the waiting around for tests.

I don't quite know if I can say anything that will help you feel better because I think I would be freaking out just as much. Do you have friends you can phone for a vent?

Oh goodness OP. That's a lot to take in. I'm not surprised you are feeling beside yourself. I've no advice but wanted to wish your daughter and you and your family the best.
💐💐

Is there anyone she could've picked herpes up from? If not, I'm thinking (hoping) it's unlikely to be that. Great news that it's unlikely to be bacterial meningitis. Here's hoping the results are as reassuring as possible. Thinking of you x

Encephalitis is swelling of the brain. The brain damage would come from swelling IF she had it. But I'd think they'd know by now if she had brain swelling. You've got her in there quickly, she's being treated. Is the rash like blisters or more of a spotty rash? I'd be surprised if it's herpes with no blisters. Remember if she has something viral it could be a viral rash, which looks scary but isn't dangerous in itself.
Thinking of you and hoping for a speedy recovery op. ----

My DD had meningitis when she was three weeks old. She had high fever and wouldn't open her eyes. She had a lumbar puncture and it turned out to be viral meningitis. She's a preteen now and has had absolutely no long-term effects from the meningitis. She's a lot more hardy than my older DC, in fact!

Wishing you and DD well for a speedy recovery.

Thank you all so so much - can’t tjink of a single person she’s seen since born with cold sores and I’ve had them in the past but not for years and docs say would most likely be from someone with an active one. Totally lost appetite but feeling so grateful for parents who are being ace wth my eldest and my husband who is just so so calm and steady. In “real life” ie work, house, finances etc I tend to organise and lead everything and feels odd totally leaning and will try not to as this goes on as unfair but right now he’s just the perfect partner. Need to remember that next time forgets to insure car etc :)

Right - Herpes and enterovirus ruled out and so now looking at just antibiotics and no longer doing anti virals which I think they’ve explained is good thing. The working theory is still some kind of viral meningitis with as yet unknown cause but continuing antibiotics until clear no bacterial infection too... not sure what other causes of viral meningitis could be but in uk in well babies apparently one most worrying would be herpes so not out woods but drs seem pleased. Wonder if would apply to Spain too though as was there last week but apparently Labs know that.. Temp up and grizzly but smiling a bit and been watching tv with me :) I think I’ve got scared about this encephalitis thing because other viruses that still in the frame can still cause it despite herpes being ruled out and no idea what we’re looking for - west Nile? Measles? Something random? Does anyone know anything about this? X

I’ve been there op, when ds was 7 weeks old. Temp 39.5, heart rate 199, he had a lumbar puncture and the fluid was cloudy. They told us bacterial meningitis. Have him 2 different iv antibiotics. Took 4 days to establish that it was viral meningitis caused by an enterovirus. He was absolutely fine after 5 days and we were sent home. I have tears in my eyes just writing and remembering that. We were so terrified. I hope you are as lucky as us and your little one is recovered and home soon.

So glad it ended ok for you in the end! I think enterovirus ruled out now... just don’t understand what else could have caused all this and what Lomb term effects to be prepared for x

Long term

Oh Op I’ll be thinking of you and your precious little girl. Have the doctors given you any indication of what they suspect?x

I don’t think they know themselves at this point because they’re waiting on results and most obvious candidates been ruled out so just waiting on cultures, thanks for being so kind x