DD in pain, unable to walk, what do you have to actually do to get help?!

[StandardEEEK]

Back story is that DD aged 10 has been having increasing hip pain, which became more frequent. GP suspected hip dysplasia but this was not shown in the x ray, so she has been referred to paediatric rheumatology.

Frequently it gets very painful and she takes pain killers now on a daily basis and often limps.

Finally the letter came through to 'call and book' her appointment with rheumatology. The earliest appointment I could book for her is in October!!! I have however called her GP who based on her being on daily pain killers has written to rheumatology to ask them to expedite her appointment so hopefully that will be brought forward.

This evening we went to the beach, she swam and that was fine, swimming usually helps, then she and a friend went to the park and she started limping so badly, she could hardly walk and was in v obvious pain, my friend had to drive her from park to my car as we were parked further away. In the car home she said she really just wants something to help. I was almost tempted to go to A&E but I don't really feel confident to, like they could just say to me 'don't be an idiot you have a referral' and send me home feeling like, well, and idiot, and with DD no better for it. Also I am single and have a teenage DS who I would have to consider before going to A&E. So have given painkillers and she has been on the sofa since we got home, she is comfortable for now but that is because she is sitting down.

Not even sure anyone would have anything to say, I think I perhaps needed just to type that to get my thoughts together, not that they are particularly together, the whole thing makes me feel sick and I can't really deal with it - anyone got any advice it would be appreciated, I want to contact the GP again tmrw but feel like I am a total nuisance to them at the moment :(

Thanks all.

Giddy that is interesting, need to see the outcome of the request to expedite the appointment first - which should be by the end of this week.

Poor DD came over sick & dizzy while having the blood test so had to lie down for a while with the GP holding her legs in the air! The first vein didn't 'work' to draw blood from either. I'm sure it is all normal stuff but I found it a bit traumatic and DD obviously wasn't exactly enjoying the experience! We have an appointment booked on Monday morning to discuss results. Feel so sick thinking about it. DD is oblivious to my worrying and just wants them to do something to stop the pain, stopping the pain would be amazing.

Went for a nice walk with a friend afterwards but as per usual DD is now suffering having walked. It is all so rubbish. We drove past her ballet school today as well and she said she really doesn't want to leave ballet, and I don't want her to either, but I can't see how she will be okay to dance :( Feel like this whole thing, whatever it is, is taking over my life at the moment :(

My dd had this at exactly the same age, and had to use crutches
She had scans and they couldn't find what was wrong. She is now nearly 17 and occasionally has the odd twinge. Hopefully your dd will get better too.

Dingit that is interesting. What tests did they do? Did she ever have an MRI? Did anything help your DD? Sorry, loads of qs!

As far as I can remember, MRI and X-ray. She couldn't walk for a week, then she bounced in to my room one morning announcing she could. I can only assume something clicked back in. It then happened again for a shorter time.
She also did ballet, and for some inexplicable reason often walks on tip toe ( still does), so this maybe a factor.
It was very worrying at the time, I hope you get some help and answers

As a former Paeds A&E nurse, I think you'd have been well within your rights to attend A&E with such a drastic change in her condition. Paeds would see and be able to ref on from there. Regarding your GP speeding up the ref, I'd be wanting them to phone & speak to the team rather than writing as feel letters are too easy to brush off, whereas contact with the secretary of the team might help things move more rapidly.
Fingers crossed it is sorted v soon

Thank you Lofty that is really helpful. I was so worried about 'bothering people' but from my GP's response yesterday I wish I hadn't worried so much. I was even worried about bothering her but she didn't make me feel like I was being daft at all, she seemed to think us being there was quite legitimate! I suppose the NHS has such a fine balance to make in making sure people know not to use A&E unnecessarily, but to (bloody well just) use it when needed!

Dingit - that would be amazing if DD had something 'click back in'. I am aware ballet is straining on hips due to toes being turned out. DD loves dance though :(

Hospital called today, we have an appointment TOMORROW.

Relieved.

Slightly scared. Need my brain to stop thinking between now and the appointment.

Oh goodness that is quick. Don't try to second guess why that is - it could be as simple as GP fax coinciding with a holiday cancellation. I have done the 'Argh that means it's awful' only to find out it was something that was bad but very easily fixed :) Good luck.

I hope you can get some answers at the appointment , best wishes .

Good luck with the appointment

Thanks all - Giddy that was exactly my thought process! Been up since some silly hour listening to crap music on Youtube and trying not to think!

Deep breath

I hope you get some answers today! Hopefully they just had a cancellation for you.

Yeah they did just have a cancellation! Wish they had just bloody well told me that to save the worry!

Bloods = fine thank fuck.

The whole appointment, well, I don't really know what to make of it!

Consultant agreed x ray seemed normal.
Discussed all the problems, pain, limping etc.
Discussed family history of EDS.
Looked at all her joints. Agreed she is hypermobile and does have an unusually large scar but didn't want to dx EDS as she does not fulfil all criteria and he thinks in the case of the hip pain that EDS in the family is a red herring.
No outcome regarding dx of hip problems but:
Almost def ruled out is = perthes, SUFE, bursitis, juvenile arthritis, and toxic synovitus.
Most probably ruled out but small possibility is = developmental dysplasia that was not seen on front x ray, ewings sarcoma ().
What he thinks it will be is = mystery joint pain!

DD has been referred for an MRI, and has also been referred to physio.

No useful info given about day to day pain management though (other than to avoid carrying her because I could injure myself!).

Good news that nothing bad was mentioned!!
But don't understand what is physio going to do if they don't know where the problem is?
Maybe MRI gives the answer! Given what the consultant said I still believe it's the muscles (best case scenario!) let's see though what MRI will say!

Does your DD have pain in the groin that radiates round the bottom of her bum cheek?

smoking are you thinking about sciatica?

Another - that would be good but I am not sure it is because, (and this answer's smoking's q too) the pain is very much located within the hip bone itself, it doesn't radiate anywhere and the consultant did do some pressing of muscles etc and found no issue.
He has said the physio can help with core stability which will hopefully help regardless of what is causing the problem.

Hypermobility can cause pain by itself and can be difficult to deal with, without it being quite as bad and life changing as EDS. Core stability physio is normally prescribed for HM as it helps strengthen the muscles around the loose joint. Has she tried swimming? That might help too (nb I have EDS and had very painful hips at your DD's age).

This is all very similar toy dd. she was initially diagnosed with juvenile idiopathic arthritis, but after ultrasounds 8 months into the process, re diagnosed as hyper mobility syndrome. It's a complete arse as dd looks 'normal' but we frequently put her on the buggy on days out (she's 8, her sister is 3) as she is unable to walk. The best thing we did was to consult a private sports physio. You could get podiatry also? It's a biomechanical issue for dd, has this been explored for your dd?

Cross post unweave this is dd precisely.

Bollocks isn't it Rainbow and imip! I suspect that DDs pain will be put down to hypermobility eventually, which will be a bit crap because treatment all seems a bit vague, ongoing, nothing is ever really resolved and it is something you then have to deal with for the rest of your life I suppose.

Did is only 8 and has to do lots of exercises with weights, it feels so mean - she often crys during it as she doesn't want to do it.

One thing that really helped did though was wearing a decent pair of stability trainers ALL the time! It's been almost 2 years now, support is very patchy, and I've had to push a lot. I've just pushed for an occupational therapist to visit school to see what things they could do to help pace her. drives me NUTS!

Eeeek it's good that there aren't any worrying causes but it must be frustrating to be left in limbo.

I've found that there's a massive difference between hypermobility and JHS as a diagnosis, but the diagnostic criteria for JHS seem to require longer experiences of pain and dysfunction. It sounds like she may get a JHS diagnosis in the end.

I agree with others that private sports physio has been life changing for me. Orthotics helped massively before but actually now I have switched to barefoot shoes whenever possible, with the hope of strengthening up my feet. It has done away with my chronic foot pain (medial cuneiform). This may not be appropriate for growing children, though.

I don't know if they do Pilates for children but this also helped me a lot (with strengthening up my core, and also learning which muscle groups should actually do the work - my firing patterns were all wrong).

When I feel the pain your daughter is having (by the sound of it, at least), it's because one of my SI joints is jammed and not moving properly. My physio is able to click it all back into place and then tape up as the muscles adjust.

I do appreciate that it's not always an option though. All the best for your DD.

Will definitely look into stability trainers. I guess they cost a small fortune right? If you can provide any links to companies you recommend or anything I would be very interested imip.

Goose It is reassuring to hear that your issues diminished post-puberty. Sorry to hear they have returned now though.

The whole thing is making me feel really just exhausted. I have just deactivated my FB, I do that when feeling particularly mopey and in danger of posting inappropriately depressing stuff.