To take DD to A&E for pain caused by a chronic issue?

[Frankmanc]

Hi all. I'm pretty sure this is probably unreasonable but I need to do something to help her and I don't know what. DD (14) had major surgery about a year ago - both femurs were broken surgically, repositioned and metal work placed inside the femurs due to extreme femoral anteversion. She had a really hard recovery (non weight baring > frame > crutches > independent walking and extensive daily physio) but the bones are now healed and metalwork remains in place.

She is waiting for removal of the rods but we're looking at another 4+ months before a surgery date. She went back to school in Novemeber following a long recovery and has been having pain since - I think all the walking around school is not helping but cannot be sure. School gave an early lesson pass and lift pass but unfortunately she cannot not move around school due to the way lessons are laid out.

We self referred back to physio who she has seen and offered some exercises which we do daily - she has another appointment with them mid Feb. I spoke to the GP who said they can't offer any other any stronger pain relief than OTC and that anything stronger would have to be prescribed by the hospital. I have spoke to the surgeons secretary (alot) and she has an appointment in March which apparently cannot be bought forward.

She is in pain every day despite paracetomal, ibuprofen, heat pads, rest breaks, massage etc. This evening after school she is limping significantly and very hesitant to walk at all. I need to do something to help her, I just don't know where to go from here.

Any ideas would be great.

Thanks

YANBU. It sounds like she’s been through a lot however as a nurse a&e would prob x ray and refer back to GP. It may not speed up the process.
The GP however can also refer for an x ray or CT or MRI and therefore you don’t need to go through a&e for this either.
Your GP may be also to be able to speed up the process by writing to or ringing the consultatnt or secretary. My GP did this for me

Yes, it’s inappropriate to take her to A&E with a chronic issue doing it’s chronic thing.

What’s not ok is the lack of aftercare. If the secretary can’t get a suitable appointment then consider going through PALs to help navigate the system and find suitable support. That might be through Occupational Therapy, or pain management, or orthopaedics, or child community health for the holistic impact.

In the interim, maybe worth going back to the physio and see if they can help with a better management and rehab plan. Superficially it sounds like may have ramped up too much too fast in the latter phases. Even after technically all healed there’s a lot of rehab to do to rebuilt strength and stamina. Overshooting there will lead to pain and exhaustion. Rest breaks is an ok idea, but only if they’re enough. May still be at the point where needs more rest time than school time.

I would like to add that after the physio session when the physio asked 'any questions' I asked if after her next surgery to remove the rods she would be likely to need alot of physio. The physio replied 'she has rods!?' I said yes, she said 'on the inside of the bone?'. This was all in her notes and whilst she was lovely, it didn't fill me with confidence.

Gosh, your poor DD. I think the problem with A&E is that they may give her something stronger but it’s a one-off or short term, and your DD will continue to be in chronic pain.
Can you ask for a pain clinic referral?

I think maybe try and see another GP at your practice, a second opinion? And also ask them to 'nag' the hospital. It's unacceptable to leave someone so young in pain like this. Really sorry for your daughter.

I wouldn't take her to A&E unless the above fails, or you have already done it. Just because it's miserable there and you will be waiting so long and she'll be uncomfortable.

YANBU to want a solution, I'm not sure A&E will help though. In your shoes I would email your consultant and explain the problem- they may agree to prescribe without seeing her or they may call her in.

That's appalling. Absolutely unacceptable. Is it a GP physio or hospital physio?

I would complain to Pals about the delay in her treatment, but as she's in acute uncontrollable pain I would try to get a prescription from a hospital doctor via whatever route you can.

Your poor girl.

I think we will go back to the GP tomorrow and ask them (again) to try and expedite the appointment with her surgeon and refer to OT/pain clinic.

Her legs were born so turned inwards she couldn't walk any sort of distance throughout primary school - she had to be carried in a backpack carrier on welly walks etc whilst younger and then use a wheelchair for any sort of distance as she got older. I'm noticing her legs are pretty dramatically turning in again, probably due to pain and exhaustion.

She is in so much pain at school she can't concentrate at all and oher kids have been commenting on her legs/feet. She actually changed schools for her return to school due to so much bullying pre-surgery and now it is starting again at the new school she is devastated. It isn't blatant bullying as such but more 'why are your legs like that?'. She told me today 'the only thing I have learnt since going back to school is my legs turn in again'.

This was a physio with the service for children's with additional needs. DD has been seeing physios there since she was 3 and most know her very well but I think this lady was new.

Youngest DD had internal fixations. is there any possibility your DD s may be having a growth spurt?
Asking as when my DD had a growth spurt with them in place and that made it hurt, a lot. The pain only subsided once she finally had surgery to remove them. It is worth calling the orthopeadic surgeons secretary and leaving a message if she is still under their oversight and care. If not camp out at the GPs and refuse to leave until she has an appointment to discuss her unmanagable pain levels following complex surgery. I am so sorry that you have been left in a situation where all you can offer is paracetamol and ibuprofen over the counter.

Bone pain post complex surgery with metal holding everything together is very painful. More so when bone restructuring is needed and whilst physio can help it’s only one part of the pain management options.

If the pain is very bad in all honesty call NHS 111 and see if you can access medical advice. If she really cannot weight bare then yes, head to A&E. X rays will show if there could be a hidden issue with the rods she has in place. Sometimes even the best surgery can damage growth plates which can cause extra pain (rare as surgeons work hard to protect these but it can happen)

The best support my DD had for pain management was from the paediatric orthopaedic anaesthetists at the orthopaedic hospital. Your DD GP should be able to refer her back to the hospital as an urgent case for improved pain management. It can be dome as my DDs GP did that for my DD.

Your daughter's GP can prescribe something stronger than paracetamol and ibuprofen . Completely unacceptable to leave her in pain without trying something stronger to tide her over until the rods are removed . I have found that sometimes you need to shout loud in order to get the care you should . The GP could follow up with your daughter's team at the hospital for advice on what they can offer for pain management if they are unwilling to give anything stronger than OTC .
If her pain tonight is uncontrollable id take her to A and E. Id also

Talk to the school about making reasonable adjustments for her - it can't be impossible to rethink the timetable so she doesn't have to walk around so much, it's something that schools have to do fairly regularly for children with mobility problems. Does she have an EHC Plan to give her support with things like this?

Her GP tomorrow and accept better pain relief. But also get an urgent referral made to the Ortho team again- contact PALs if necessary. Poor lass.

If she has had a recent increase in the pain I don't think it would be unreasonable to get her checked out. It would be rather negligent if her increase in pain had been ignored with the suggestion that she should wait for her referral and appointments then you find out long after it could be fixed that something had shifted, causing further damage by being left unchecked.

Honestly there is little point in trying the gp - realistically she could get some co-codamol of over 12 but long term the risks of addiction are high and it wouldn’t be a preference to prescribe.

people often talk about letters to expediate treatment - rarely does it help unless the situation had changed dramatically. If she’s on the urgent recall list a letter won’t change that over another person on that list.
I’ve found it helpful were I’ve said patient had x and y symptom, now z has developed im worried about a or b condition, that previously wasn’t a worry.

For something as complex as your daughter under specialist care, it really needs to be the specialist who sees her. I’d get back on the their secretary, emphasise you will take a cancellation or advice from the team in the meantime.

Id look at school, is a reduced timetable ideal? If it’s moving that’s too much pain, can she go in later, come home earlier? Or even tomorrow off to rest. It’s unlikely that analgesia would be sufficient without side effects.

If you're thinking about A&E it sounds like you are both at the end of your tether with this and it sounds like your daughter has had a really difficult time. But, in all honesty I can't see what A&E would do to help here.

If the issue is likely related to moving around the school, could she use a wheelchair instead of some of the walking? Or would any mobility aids from the physio like crutches be helpful. The first thought with pain like this is to modify the activity and make sure it isn't just too much too soon. I know it feels like a step backwards but it's about finding what she can comfortably do and building from there.

When you change the way someone moves by changing their anatomy, it can take a really long time for their body to adjust and where you have increases in activity, seeing pain like this isn't unusual.

It's probably not as simple as just going for stronger pain relief as it doesn't really get rid of pain, just takes the edge off, and it's likely to come with some side effects and, if used in the long term can have some quite significant risks. Likewise, expediting the next surgery is probably not going to cure this pain (unless it's pain in one specific place related to metalwork).

I know this feels like a cop-out but in my experience, to manage pain related to activity, the single most effective thing to do is to modify the activity.

This.

If there is a chance the pain is because something has gone wrong, and needs attention, I would have no qualms in taking her to hospital.

However as pp says it really needs to be the right team who sees her - not necessarily the consultant but the correct team who will know what to check for. Can you find out who else works with her surgeon? Maybe there is someone more junior who can see her quicker than March, or the relevant nurse team, they will know a lot too.

I suspect the others are right, minimal benefit in going to A&E with how you describe it. Absolutely yes go if there was a sudden significant worsening of symptoms. But if it's just the quite reasonable frustration and anger with the waiting lists - then you're just going to be told to see GP. Sometimes they'll say they'll send the expedite referral request - which if there's no significant change (I.e. can no longer walk type change) won't have any influence.

Yes there are stronger painkillers out there that a GP can technically prescribe, but using anything stronger that makes a significantly meaningful reduction in pain levels over a longer term will have serious side effects + will stop being effective. So back where you started only additional significant issues.

Personally I absolutely wouldn't be pushing for anything stronger than regular paracetamol unless what she's going through is not bearable.

While you are waiting for all the other things to come through, have you considered minimising the impact of walking? Sounds as though pain is triggered by the need to move around in school so much so why not think about using a wheelchair for parts of the day?

I can see how this would be incredibly frustrating.

For future, to get the best out of an appointment with someone new, or that you’re not confident has all the latest info to hand them it’s always worth a brief recap on why you’re there and what’s gone on recently.

The physio was quite possibly working from an appointment outline that said something like ‘leg pain’. Notes for anyone with any amount of medical history are tough to digest and rarely come with the ‘summary of current situation’ handily stuck to the front page. Specialist clinics sometimes have time allocated to prepare for the appointment and developing a plan. More routine services like physio tend to have to work with what’s in front of them and the info they get from the patient.

It’s a shame that the system isn’t better, and it’s easy to forget it when you mainly deal with people who are very familiar with her, but for anyone who isn’t it’s probably helpful to assume they’ve not got any useful background and give the 3 minute rundown.

Health care professional here:

Recommend requesting consultants review ASAP. Contact via consultant secretary or if this is unsuccessful speak to GP and ask them to do this.

If any complications are ruled out request physio (again asap). Is your dd doing any exercises and stretches that she needs to?

As the distance for school is an aggravating factor this needs a plan in conjunction with the SEN team at school, possibly with Occupational Therapy recommendations if it's possible to get an OT assessment (ask through GP or consultant). Pain will be affecting concentration and school performance so it's in the school's interests too

Finally - well done to your dd for having this OP. I didn't and am suffering so hopefully in time it will all be worthwhile for her