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 :(

Is she taking a vitamin D supplement? It may not be but I was deficient in vitamin d and I had numerous tests for RA because I could barely move because of the joint pain.
A few weeks after taking vitamin d, I was a different person. I still have joint pain when I stand for a long time or sit for ages but it is so much better.

Was wondering if this matches her symptoms?

www.perthes.org.uk/what-is-perthes-disease/

(Sorry, not sure how to do links).

Push hard for an earlier referral, that's really unacceptable. Poor girl.

Painful limp in a 10 year old could be a number of things. If she's able to bare weight on the leg and is otherwise well (no fever/lethargy etc) then A&E probably wouldn't be able to help you, but I'd certainly try and expedite the hospital appointment. Don't mean to be offensive, but is she a particularly heavy girl, and is she pubertal at all? The one thing I'd be concerned about is a slipped upper femoral epiphysis, which is very uncommon in 10 year olds, but can present as insidious pain/limping, usually in overweight or pubertal children. It's easily missed, but needs urgent treatment. If this concerns you you could think about attending A&E, but if she's normal weight and pre-pubescent then waiting for the hospital appointment shouldn't do any harm. I'd rest in the meantime, whatever you decide. Things like Perthes are more common, but usually treated with rest anyway, and treated as an outpatient.

Could it be 'irritable hip?' A friend's ds has it - checked out at hospital after what sounds like similar episode of pain/limping and scans and so forth. Drs say it can be managed with ibuprofen and will die down.

Thanks all. In response to your comments -

MrsPnut - def worth a try will have a look at supplements.

Lalakahle - Perthes was actually what I thought it could be when I took her to the GP, that is def on my radar.

Bamboostalks - thanks, October is a bloody joke! I thought I would be booking something in for next week when I called!

Chiruri She is pre-pubescent and not overweight, she is v muscular from dance and gymnastics and quite solid though! That makes her sound like a sumo wrestler! She looks 'normal' size, wears clothes for her age or slightly smaller. Do you have professional experience of slipped femoral epiphysis? Would that fit with it slowly getting worse over the course of a year from occasional niggle to what we were dealing with today?

Clam - Because DD is generally very healthy and irritable hip/toxic synovitis usually occurs after an infection of some kind I have pretty much ruled this out, also symptoms I have read on this don't quite match the location of the pain, although of course that the x ray did not show anything makes this still a possibility, and although it has no definitive 'cure' that it is not a long term condition would make a dx of this a relief.

I'm not sure what to do tomorrow, whether there is any point in contacting the GP again, I don't know what they can do? I don't really want to resort to stronger pain killers.

Btw - Chiruri she was really hardly able to bare any weight on the leg when she was at the park today, I had to piggy back her from the swings to my friends car. It sounds like this is something you have some knowledge of? Would that be cause to go to A&E? From an evening on the sofa it took the edge off, but she still struggled a fair bit getting to bed :(

I'm sorry it's taking so long. Go back, and push the GP for another option or a speedier referral, I think.

I'm not in any way medically trained but I have had this problem with one hip. It was a sacroiliac problem and I have, finally at the age of 30, been diagnosed with hypermobility syndrome. I had my first bad problem at 13 and had scans, physio, and v strong painkillers. All it really needed was an experienced physio and it was a simple manipulation to relieve 90% of the pain.

Is there any chance your DD could be hypermobile? Look at the Beighton score for ideas of the quick diagnostic tests.

Shootthemoon she is hypermobile and we do in fact have a condition in our family (EDS) of which hypermobility is one element, but I am not entirely convinced DD has EDS. That will certainly be something that I will be mentioning at the appointment though. When we finally get it.

has she had an Xray ?

AnyFucker yeah, it was normal apparently

Ah, ok. EDS makes sense and I guess you will know about HMS in detail. Does your family have a different type of EDS to the joint version?

That does sound similar to my pain - at its worst, after a fall, I couldn't put my foot to the floor, and lots of big muscle groups were in spasm because my pelvis was jammed in an odd position. At 13 I didn't know any of this and was off sport and on heavy painkillers for weeks and months, which is completely the wrong tactic because then the other muscles atrophy and are even less able to cope.

Your DD's case sounds serious for such a young child - obviously other things need to be ruled out by medical professionals, but if you can afford it I'd highly recommend private physio asap - you'd know in one session if she can be helped.

I have had endless occurrences of HMS issues which have been largely mistreated or just missed by GPs. A good physio changed my life and I so wish I had known sooner.

In any case I hope the answer is found quickly for her. Chronic pain is so exhausting. Good luck.

Perthes and SUFE is ruled out then

my dd went thru something like this op. in the end after weeks off school and two trips to a&e we got to see a specialist who immediately diagnosed tight illiotibial band syndrome. dd's pain was on the right hip, over the side of the hip and slightly down the top of the leg.

it came after a very fast growth spurt, and it was worse at night/lying down. she said it felt like her hip was clicking out, but she has scans and xrays that showed the joint was fine. It was the band itself rubbing somewhere.
just a thought at what it could be, dd was facing steriod injections at one point but after a few months it clicked back, as she called it. It was a long road.
dd is hypermobile, and this was the hip that was clicky at birth. She has to be careful still, and some sitting positions on the floor, or on chairs can aggrivate it.

hth

although you can have a "grumbling" SUFE which is episodic for a while

Shootthemoon - I really can't afford private, I did look into it when I heard it would be October, but I just can't afford to. My political self is completely thinking 'even if I could afford it I would feel terrible to pay for health care to get better than people who cannot afford to pay', but my parent self was just thinking 'whatever I can do', but I can't, so... its all hypothetical!

Anyfucker I believe so - but I don't know if it is possible they can be missed on a standard x-ray (as opposed to MRI?). Nobody has really told me what the x ray results mean for what it could actually be, so what has been ruled out and what is still a possibility.

Dd also muscular and a gymnast was on crutches for months with growing pains. Recovered with physio. Hope it is nothing too serious for your dd.

she is rather young for hip impingement, but you say she is well grown and does a lot of activity ?

is it repetitive activity ?

tbh though, we are all guessing

could you try getting the number the consultant's secretary and offerig to take up any last minute cancellations ?

an Xray should say a SUFE, even a grumbling one

show

Standard, sorry, I didn't mean a private referral, just call up a good physio - sports physio probably - and ask for an appointment. It's completely different to private healthcare. I don't know about child prices but appointments are usually £40ish, depending on where you are. Obviously this is still quite a lot of money.

And obviously the private/NHS thing is personal, but it's also true that at least if you're paying, the NHS isn't, and it frees up an NHS appt for someone. But it's a complex issue and if the money isn't there, it's not there! Could you instead go back to the GP and ask for a simultaneous referral for physio? Not sure but maybe they can do that.

AF's idea about ringing for cancellations is a good one.

GP should also be able to refer to NHS physio

Ha, yes, it is just guessing randomly, it is what I do constantly but with added MNers! Good idea on the consultant's secretary - my job is pretty flexible so I would be able to manage that too.