Should I go to A&E for Post lumbar puncture headache?

[Tinkerbellone]

DD 15 has lumbar puncture 4 days ago. She's in agony with headache. I've rung the children's ward sat and sun - they've said that it's a common side effect but to bring her in if she's screaming in pain.
On a scale of 1-10 (10 screaming in pain) DD Says she's at a 9.
If I ring 111 I know they will tell me to go to A&E.
...but she can't sit. Only lie down. Pain is unbearable sitting up.
I've explained all this to nurse who relayed to a Dr. They don't seem worried but it awful watching my DD in pain and unable to sit up. She has no temp. Although, some side effects from new medication.

Has anyone had any experience of post-Lumbar Puncture pain?
What would you do?

Oh bless, I hope she is okay. I also had two weeks of pain after an LP - it was shocking and I had to lie flat in my back for that time. But eventually it was okay.

Crazy you spoke to a doctor who has never heard of a blood patch! Take her in if it’s been 6-7 days, they can fade in a couple of days but if they don’t a blood patch will fix it. It’s uncomfortable, like a weird pressure spot building inside your spine, then you have to lie completely flat at the hospital for at least 2 hours, I think was 4 with me, this bit is really important so the patch doesn’t dislodge at all. The pain is gone really quickly after that but you feel like an arthritic 90 year old for a few days afterwards - you have to move slowly as if you move like bend over to pick something up normal speed it’s like ok for a moment then the movement ‘catches’ up with you and every thing sort of seizes up on you.

Oh I sympathise, I had one earlier in the year and the headache is awful. I couldn’t sit up for days but it does eventually resolve itself without the need for treatment in the majority of cases, it’s just a question of waiting it out. Did they tell you to give her coke? It helped me.

Truly awful for you both , I hope she turns a corner today x

Sounds like she needs to be reviewed, if for nothing else to exclude it's anything else.

It is worth saying that blood patches are very rarely performed in children and the evidence for caffeine is also somewhat mixed.

I really hope your DD is ok OP?

The only way to treat is via a blood patch, i had this a few month ago and only because I hounded them, they didn't want to do it as they were 'too busy' and it ' usually ' resolves within a week

If she's anything like me that pain only eased while laying flat, but laying flat for a week can have its own complications ( for me I have a blood clotting condition)

Please just push this with A&E if she's the same , it was my anaesthetist who eventually agreed

Wishing you both all the best

Hi thank you for all your support. DD has woken up much improved. Pain is at a 6. She's dizzy and feels exhausted when she does anything but she is moving about and out of bed. I'm hopeful she's turned a corner. I'm waiting for a paed consultant to call me. Xx

Do you know what the opening and closing pressures were? With intercrainial hypertension if they drop the pressure significantly and can be enough to cause a headache similar to if there was a leak. Has she recently been diagnosed? If your not already I recommend joining the iih UK Facebook page- they're full of great advice!

The difference between the OP’s scenario and almost every other one people have referred to is that this is a result of intentionally removing CSF, not as a result of accidental dural puncture/spinal injection. If the primary problem was that she makes too much CSF then it’s not beyond the realms of possibility that the headache will fix itself. Needs keeping under review by the team for signs that it’s not fixing or for any more alarming symptoms, by it may well not need a blood patch (a blood patch isn’t without risk and as well as potentially making a csf leak worse, it could also raise the pressure enough to make a high pressure headache come back).

if her symptoms continue she made need a blood patch performing. A quick procedure that provides almost instantaneous relief.

If the ward say they can’t help, go to A&E and ask for the oncall anaesthetist to assess her.

@assuport and @Greybeardy raise good points. I hope your conversation with the paediatrician is constructive/reassuring.

Huge sympathises to your dd. I had a LP and the brain really doesn’t like it’s spinal fluid being pissed about with.

I read the first few sentences of your opening post and was screaming at my screen YES bring her back in.

It could be a post-dural puncture headache and my MiL had dizzyness, tinnitus, migraine and a whole heap of other knock on side effects from having a lumbar puncture done. She literally couldn't do anything for months.

I'll go back and read the rest of the thread now but if you haven't brought her back, do it now.

This is exactly the treatment that my MiL had when her lumbar puncture left her with debilitating headaches.

I've been in this position and it didn't resolve. I had to be admitted and the only thing that shifted it was an epidural blood patch.

I had to kick off a little bit to get the procedure, because they kept trying the wait and watch/drink caffeine routine but I had a 9 month old at home and had already been in hospital for 8 days.

It was horrendous, worst pain I've ever experienced, as soon as I lifted my head it was fireworks and vomit.

Had the epidural blood patch, instantly felt better and was discharged 2 hours later.

Push push push. It's suffering to another degree.

Def take her in and tell receptionist that she needs to lie down. Take a blanket in case they have no trolleys available.

That's good news OP.

I had a student do a bad LP on me about 20 years ago (I had meningitis). He dicked about with the needle about four times and then had me sitting up in bed for the next three hours instead of lying flat. The pain from the leaked fluid was 1000 x worse than the meningitis headache. I was not offered a blood patch or caffeine and was the worst pain I have ever been in (had DC with no pain relief for reference).

I was on my back unable to even lift my head off the pillow for three weeks. I lost over a stone and even had to pee lying flat with a really flat bowl (almost a plate) slid under me. I literally could not lift my head an inch without vomiting and fainting. It really was the worst of times. I just remember being out of it on some opiate pain killer and my lovely GP dropping by out of hours, uncalled, just to check on me.

All of this to say, don't underestimate the awfulness of the pain. If things get worse again, please take DD straight to A&E.

I had 2 failed blood patches until they put it in the right place and then had to lie flat for 24 hours after the 3rd one which finally solved it
worst 12-14 weeks of my life