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.

I hope you've had a better night. Is it likely to be "48 hours" for them to decide bacterial cultures are negative (assuming they are)? If so then I guess you've got till tomorrow morning for that actual answer, hope you have a more settled day today and steady improvements while waiting.

For what it's worth - I think that the main difficulty for babies and young children needing lumbar punctures is that they have to be held firmly and in the right position while it is done - most of the screaming will be a result of not be allowed to move. If they are held right then it helps get it done quicker. Still an awful experience for parents to have to go through.

Thinking of you OP and your lovely little one. I’ve been there with my DS when he was 6 months old. It’s a worry like no other

Also random but North London near McDonald’s - you don’t happen to be in the Whittington do you?

I was an adult when it occurred, but I've had the double whammy of both viral meningitis and encephalitis. There was a bit of damage but the brain is a remarkable thing and I'm absolutely fine now...

You poor thing and so glad was ok in the end! So sorry for everyone who has been through this - we slept last night though so feeling better and trying to stay hopeful! We are indeed the Whittington yes! Staff so so amazing, just wonderful. Thanks everyone for being so kind!

Sounds like good news thus far, OP. Hopefully you'll be free to take her home soon.

Big hand hold here. It’s so scary when they’re tiny and seem so vulnerable. It’s great they’re ruling out one thing after an other and I hope you get more good news and some improvement today. It’s amazing how quickly they can get sick but also amazing how fast they can turn it round and be almost back to normal again.

I had encephalitis at 9 from measles but was fine once I was better. I have reduced hearing in one ear but that’s a complication of measles not the encephalitis.

Try eat something if you can and if you’re feeling too stressed to force anything down, try milkshakes. That might be easier to get down and will give you some energy. Unmumsnetty hug and healing wishes to DD.

Hi OP, dd went through all this straight from delivery and it was terrifying. Our LP results showed meningitis but the actual cause was never identified. It's a very good sign that they think it's not bacteria or herpes though- they are the 'worst' ones.

You will just have to take things day by day, and will have developmental checks by a paediatrician.

If it's any consolation, my DD appears to be doing really well, but I still worry about her development now and she's over a year and a half!

You poor thing - it’s so scary isn’t it?! Think we are in the same boat now. Just had such a helpful and frank update from paed. Have the option of discharge probably tonorrow with ongoing IV antibiotics delivered by community nursing team if they have capacity which they’re checking. Also able to stay in hospital if prefer. Leaning towards leaving tomorrow if she’s stable today as they’ve made it
Clear the second we’re concerned we can come straight back to the ward where they will readmit and pick up her care. She needs a hearing assessment and then a follow up with paed some time in the future but in terms of long term impact of this basically said was optimistic but would just have to watch her development and keep an eye on milestones bringing her back in if concerned. Feel much calmer overall now and she really seems more herself so think case of thanking god it wasn’t worse, staying calm and positive and going one day at a time now 🙂 also - I know the nhs is a huge and varied organisation but the speed, professionalism, intelligence and tenderness of the care here (seen with seconds of arrival, complex scary concepts explained patiently and clearly, cuddles when tearful from gorgeous northern Irish matron who reminded me of my grandma, towels and offers of radox for calming bath whilst they watched baby) been such a reassurance that the world is not as awful as the news would have us fear sometimes!!! Thanks for all being so so lovely xxx

maidof I thought so! Wasn’t a random question but to say their paed team are the complete and utter heroes of all time and have saved my son’s life twice to my reckoning. Angels all of them and some really bloody brilliant doctors who saw spotted and calmly dealt with a very rare heart condition for us. Amazing place. You’ll be well looked after. Glad they are hoping for discharge tomorrow

So glad you had a better night and there’s a good chance you can go home tomorrow. It makes such a difference when you feel in safe and compassionate hands and makes a scary time a little easier. Hoping DD keeps on improving. Look after yourself too.