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 :(

Oh imip that sounds like the most hideous struggle. I have also been quite paranoid that people just think I am being neurotic and making something of nothing. It doesn't feel something of nothing when it is your life though does it?!

Op - has she got decent painkillers? DD uses diclofenac as naproxen doesn't seem to help her. She also has paracetamol. Although they say ice packs can help, she actually finds hear better. She is currently under a physio and doing exercises to strengthen her hip muscles. She wears a knee brace when required and orthotic insoles. She cannot wear flat shoes as that makes her back pain worse. She was particularly bad at approx 12 years old (puberty) and that's when she was diagnosed with hypermobility.

DD did have a GP apt scheduled this morning to discuss her blood test results before the consultant appointment overtook that.

She was in pain from the moment she woke this morning and said the pain meant she could not sleep last night, so I kept the appointment.

The GP did absolutely nothing. Said he did not want to prescribe stronger painkillers for someone so young (I agree really, but also, feeling desperate). He saw her hobble out and said it is very strange especially that the x ray showed nothing.

Going to call consultant's secretary and chase on everything.

Took the car into the garage after I dropped DD back home, came back to find her on her ipad looking at crutches for sale on ebay!

EEEK I'm sorry your DD (and you) are going through this. I don't have experience of hip pain in children, but I have labral tears in both hips, and hip impingement. I, also, have severe back and pelvic problems. I have to use crutches all the time.

Hip pain is horrid. I do find that icing the joint is much better than heat, especially when you've used it. I, also, use a TENs machine. I've just done a quick Google to check children can use them and you can, but maybe check with your GP? They can be very effective and you can pick them up in Boots, Lloyds, Amazon for less than £20.

HTH.

OMG TENS machine is such a good idea that I hadn't thought of, thanks so much TitsOnAFish!!!

Standard I know a top private orthopedics consultant in London but he's in GOSH as well
If you don't want to go down the private route can you ask your gp if he can do an urgent referral to this guy in gosh?
I understand it's far for you but travelling there for the day could potentially give you answers quicker
If you need the info let me know and I ll pm you his details (I used him for both my DCs)

London and back in a day would be a bit crazy for us, but no harm at all in having the details in case I get (even more) desperate Another, thank you!

Bless her, I saw a private juvenile physio at a sports physio place. Looked at how she stood, muscle weakness, gait, the lot. She may need an ultrasound, but our gp kept referring dd to urgent clinic at local hospital when nothing was being done.

Private physio was the key for us to confirm general mutterings from various consultants who were a little clueless (it might be this, or it might be this). Armed with this, I went back to my gp who referred as neccecary.

Our appt was free, but perhaps if you ask for recommendations on here for a local physio. It'll only cost one appt. our priv physio was previously a nhs physio so told us what to ask the gp.

I have RA including in my hips and it's the one place that the inflammation is not obvious because it's such a deep joint. The impingement in my joint showed up on contrast MRi far better than the original x-Ray. It came on suddenly unlike the rest of my joints and started with a sharp pain so they thought I'd torn something. I was offered surgery but they said that there was no guarantee it would work and was quite a major op. I ended up with physio which made a massive difference. I also wear trainers or very supportive shoes which make a massive difference, funnily enough barefoot causes quite a lot of pain the next day so even around the house I wear a decently soled pair of slippers.
Pain sleeping can be awful and not getting sleep can make it worse. Hot water bottle or wheat bag or an ice pack. Try a warm bath before bed and put extra pillows in bed to either cuddle round (like when pregnant) or wedge into a comfortable sleeping position. Often I wake myself up by rolling onto my painful hip.
Tens is good but you can quickly become immune to it, so it's worth using it as sparingly as possible.
gentle massage with lavender can help prior to bed too.
Hope you get her comfortable soon.
I have found my RA a long road that you do have to keep chasing and annoyingly the solutions sometimes take a long time to work but they can work.

Standard I sent you the details

Just a thought, pls bear in mind that although she has pain in the hip it might the trigger point might not be there (called referred pain I think)
So yes as other girls said just one visit with a good Physio (or even chiro) might spot some not obvious issues with posture etc but basically somewhere else in the body with are easily fixable!

Another - thank you. Hopefully won't be needed but useful info to have.

All others - thanks for your comments.

Will try again today to contact the consultant's secretary - third day in a row - last two days no answer! I want to chase on the MRI, and let them know I am happy to take cancellations, no use if I can never get through to them though!

Can't you pop over? Is it far?

To the hospital department? Do people do that? I am SO not used to the NHS as an organisation to navigate and for some reason go into rule following mode!

It is about 12 miles away, and parking is a PITA as per all hospitals but that is not a bad idea! I am going into town on Friday afternoon anyway so if I don't get through to them tomorrow or Fri morning I think I will.

Another day with DD ending up in loads of pain, every day like this is ridiculous.

You are within your rights to go and speak to them especially because you have a referral! I've done it before for early pregnancy related issues
Tbh because of her pain I would take her now to a&e, i d say that you've seen the consultant you are on a waiting list for MRI but pain is unbearable and she was screaming last night
At the same time is go to hospital and I would say the same thing and that you are trying to reach them with no luck and you need help with MRI now or at least to put your name down

Be prepared they might be rude nasty whatever but do you care? Be tough and go for it! Dont be disheartened you can do this!
What's the worst thing that can happen? Just don't beat them up

agree, be tough. i have had to do this and we got admitted then could wait for a scan.

Thanks all - well I finally got through - which is lucky because I'm not sure I am brave enough to face A&E. Obvs if we do have any rapid decline I will of course take her.

So - consultant has referred to MRI, but because the physio referral is a letter the sec has to type up she was only coming onto it today! And I don't know if that was today because I was on the phone chasing or it was actually going to be today anyway!

The MRI goes through a different referral system and has been done, she gave me the number for the MRI team. I called there and they confirmed they have the referral but it needs to be signed off by their consultant before an appointment can be booked. Funnily enough I was told that will happen today - again.

I said that I am willing to take cancellations and that the condition is getting worse. She put me on the cancellation list and assured me she prioritises child referrals anyway. She was nice, and I have her number now so can always chase again if needs be. I have a few commitments next week (including presenting at the main annual conference for my discipline in the UK, dreadful timing!), just sent a testing the water email to my colleague/friend on one of my other commitments to see if there is any way I could be less-needed! I know my luck, I'll get a cancellation for right on the time I am due to present.

standard I was wondering how your dd is now and if there's been any progress

My dd (just turned 13) is going through something v similar

She's been off school for a week as walking more than a few paces is painful. She's had to stop all sports including riding which is the love of her life and is barely sleeping because of the pain

The GP's referred her to an orthopaedic surgeon who can authorise an MRI - she's seen the physio who said yes she definitely needed an MRI because her symptoms don't fit neatly into any particular box

She's not hyper mobile but other than that we've been told it could be any one of a number of conditions

I phoned the hospital yesterday to find out what was happening with dd's referral as she's got worse since the GP saw her and the woman on the phone was so dismissive I felt like bursting into tears. She told me I was being too impatient, there was nothing we could do to speed things up and that she wouldn't even be able to tell me where dd is on the waiting list until at least another week