Pediatric pain in hospitals - undertreated?

[Laffydaffy]

Currently in hospital with a teen. Just started a new treatment for ataxia (movement disorder) and one of the side-effects for him is a severe headache, which he says he has never had so bad. The management of the headache has been extremely poor, and I remember something similar happening with my daughter last year, and I swore I would speak up if something similar happened. Just the administration of ibuprofen and paracetamol together has nurses saying it cannot be done, and that DS has to wait four more hours, while his pain stays at an 8. I am a paed nurse, and darn it, there is nothing wrong for a combination of the two, especially when a child's pain is not well controlled.

Why is pain-management for children still such a problem? I know as adults, that when we have pain that is not controlled, we seek help. I take paracetamol and ibuprofen together if I need it, with caffeine tablets for extra help for severe headaches (not migraines). I remember kids after their tonsillectomies weeping in pain and being forced to swallow pain relief every few hours with raw, open wounds and a cannula in the arm that was still available to use for pain relief. And then I remember the midwife apologizing to me after my emergency caesarean for being a bit late with my morphine syringe-driver.

Has anyone else experienced this?

It like this on adult wards to. Iv waited hours multiple times in hospital for pain relief. Everytime you ask a nurse something they forget the second they walk out of the door then you feel like your being annoying when you keep asking.

I agree with you completely. The way my baby was just left with nothing but brufen after multiple brain surgeries/ cannulas/ blood clots/ sepsis/ meningitis etc. it was horrifying how it was literally calpol that he was offered. One night on the ward he cried and cried and cried for hours and then FINALLY got a dose of oramorph and the relief through his little body was heartbreaking to see, why wasn’t it standard pain management practice? I got codeine and tramadol after my tonsillectomy aged 21!!!

Not my experience with kids. The regime was very good alternating paracetamol and ibuprofen (unless broken bone) every 2 hours alternatively. Ketamine as soon as administered to a&e if severe pain.
Dc recently had tonsillectomy and pain relief was kept well on top of with strict warnings to keep regime up at home

Gosh, that makes me so happy to read. I cannot tell you how much. We also had a strict protocol of alternating pain relief in paeds in Australia (mother country) with an obviously maximum daily dose. In the hospital in the European country I live, they give an alternating dose of ibuprofen and paracetamol every 4 hours. I have begged for it to be given earlier, the doctors say yes, yes, and write nothing, which means the nurses follow the 4 hour scheduling. The thing is, you know pretty quickly when ibuprofen will work or not. It is such a horrible, horrible feeling, waiting the pain out, and not knowing if the next dose will be enough.

And this made me so sad. Your poor little fellow. How is he now? I remember a similar situation of a little baby after meningitis, and the night the right pain relief was given.

The thing I find surprising in your OP is that you've experienced adults getting adequate pain relief.

So sorry your child is suffering.

I think it is nhs hospitals in general .

Totally. understaffed and so even when people are screaming in pain (post operatively etc) you are ignored…

had a totally better experience in private hospital where pain management was taken very seriously and in a specialist nhs hospital where it was run far more like a private one …

but standard nhs wards in my opinions are just so overrun and so short staffed that pain is often just totally overlooked.

have spent a lot of time in hospitals having a lot of major surgeries and very rarely was pain managed well and often even when you asked politely and calmly they would leave you for hours as no dr available to ‘write it up’

It took me telling a consultant that if I as a veterinary surgeon left a dog in the level of pain that my daughter was in I would be considered negligent - he grudgingly prescribed an relief because I insisted.

He’s doing absolutely brilliantly now, thank you so much for asking ❤️ after a horrific year where we nearly lost him on several occasions, he had his last shunt in at 15 months and he’s now almost five, been hospital free since then! Was slow to walk and talk, and definitely has mild delay (presents more like a 4 year old) but he is the most gorgeous, joyous, sweet natured, chatty and funny wee soul. He is so resilient and determined, and is honestly pure sunshine! I hope your poor boy is feeling better soon, there is nothing worse than feeling so helpless and watching them fight illness 😢 xxx

It's definitely got harder to optimise pain relief in younger children since codeine got banned in under 12s, because it's seen as such a big step up between paracetamol/ibuprofen and morphine.

Yes absolutely agree, my child has morphine immediately after brain and spine surgery, 24 hours later they were just giving paracetamol. When they were trying physio that day DC cried with the pain. The physio asked if DC was easily upset/distressed. Well, no you've just cut open their head, skull, brain and removed a vertebra and all you eejits are giving them is what they had for teething pain when they were babies, bloody Calpol. When I said this I got stern words from the doctor about learning to tolerate my child's distress.

YANBU

The bit I can’t get past the bit in your post where you said you had a morphine syringe driver after your CS

When I had my first CS I’d be lucky if some paracetamol got chucked my way, midwives were SO stingy esp during the first 12-24 hours when post-op pain is an massive issue (for me anyhow). And they lost my drug chart for around 6 hours, so couldn’t me anything…thanks for nothing. And they all seemed to have a total empathy bypass

Apologies I digress, as you were…

THIS

I’ve just written a waffle about my post-CS experience with inadequate analgesia and the midwives not giving a flying fuck/any fucks at all

It’s the same for adults. Major abdominal surgery in absolute agony in the hours after offered a paracetamol.

I got the same line about ‘learning to tolerate their distress’ when they tried for the 7th time to get bloods without first applying numbing cream ‘because newborns don’t process pain the same way’. That may be but they clearly DO feel pain!

I really don’t mean this to sound like I’m bashing the NHS. We were in hospital for a year and the people we saw were incredible, saving my child’s life over and over again, I truly cannot fault them and I cannot thank them enough, but there is definitely some work that can be done around pain management I think!

That’s way too much if they were giving each alternative two hours?! Every four hours I would imagine

(Also a paeds nurse!)

I've often wondered about this. One of my DC broke his arm when he was two. It was bent like a banana. The doctor examined it and then very quickly forced it back into shape without any pain relief and I have often wondered if they would have done the same thing for an adult. It definitely hurt!

Yes my DD had open abdominal surgery last year and was given only paracetamol. 15 years ago I had similar incision with a C-section and was given stacks of pain relief - codeine and diclofenac, I think.

Thanks, everyone. Pain is now under control and DS is now sleeping. I am bracing myself for discussions with the doctor tomorrow about it because it needs addressing.

With my caesarean, the pain-relief was great. Syringe driver removed after the first day, then two or three days of oral morphine with regular Voltaren suppositories. I really felt well-treated despite the busy ward.

My DD had a lumbar puncture last year (suspected Lymes). The only experience as a nurse I had was with paed oncology, where the kids always had a general, to fit in with other procedures. I assumed that the pain relief would therefore be adequate for a child, at least a local anaesthetic, given that adults find it extremely painful but they gave my little girl nothing and had to be held still while they tried twice. She said it was so, so bad. Because of her experience, when DS had to have his lumbar puncture this year, I went for midazolam for sedation, and they tried to convince him not to, saying it would make him sleepy, but I remembered my daughter's trauma and insisted. Turns out, they had to have 5 goes (!!!) but DS cannot remember it at all. Which is really what you want when pain and children are involved, at least, as much as possible.

Why is advocating so hard?

Adult pain relief is also not great.
I was admitted with a severe kidney infection, given morphine in a and e, taken up to ward, slept couple hours and woke in pain at about 2am. I asked for some pain relief, told nothing written up and they would bleep drs to prescribe. Asked again after an hour, nothing. They actually didn't bleep at all (I requested a copy of my notes) and at 7am I was in agony and called my husband and he brought me in co-codamol from home. And then I got a telling off for taking un prescribed medicine - we told them I took it so there wasn't any risk of overdose.

I remember when now 14 year old DS2 was 10 days old and had heart surgery, he was on morphine for a day which was pretty much then reduced to calpol.
DS1 has a genetic condition (NF1) which causes benign growths on nerve endings and his leg pain was dismissed as growing pains for so long, until an MRI showed growths on nerve endings. He was eventually prescribed gabapentin with a referral to the pain clinic at the hospital.

This.

I'm so sorry to hear this, OP, but completely unsurprised, unfortunately. Pain relief in the NHS is an absolute joke, completely overlooked and nobody cares about the suffering or trauma, it seems.

I would personally give your child the pain relief yourself if it's not forthcoming. I did this last year with DD when it didn't come, despite much chasing. They went bonkers, but they'd already confirmed it was ok to have it, so I told them they had a choice of bringing it on time, or I would give it. There wasn't a third option on offer, but they were welcome to take their pick of the two. Lo and behold, suddenly a doctor mysteriously appeared to write up the pain relief and it arrived reasonably on time thereafter. Appalling that I had to do that and I complained afterwards.

You really shouldn't have to advocate for your child like this, but do not feel ashamed of doing so.

I agree. We were in hospital recently following a tonsillectomy - an admission due to bleeding and my wee one was in so much pain.

When we were initially discharged we were told how important it was to stay on top of her pain. We were prescribed paracetamol, ibuprofen and morphine, which tbh I hadn’t expected.

Then when we got readmitted she waited TEN HOURS for paracetamol. DH was with her and asked multiple times. I really regret not bringing in our own when he called and told me - I was on my way but just assumed she would have had it by the time I arrived.

Just to add - after I spoke with nursing staff about her levels of distress and the plan they had sent us home with, they were quick to alternate meds thereafter.

I recently had 8hrs of gynae surgery via keyhole and was given… paracetamol. They asked if I wanted cocodamol to take home and I said I had stronger painkillers at home!
luckily I was fine and after the first couple of paracetamol I didn’t need any pain relief