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 :(

Hmm, children's Pilates sounds worth looking into as well!

Please don't take this the wrong way, I'm not trying to worry you unnecessarily, but please be aware that it might get worse rather than better during puberty. Ligaments are incredibly hormone sensitive and some women find that they experience far more pain and increased joint problems when their hormone levels increase. In my case, I had moderate pain as a child and some other issues but when puberty hit my periods were horrendous (this can be an EDS issue) and my joints got worse and worse-at my worst I was spending a week a month in bed. I was diagnosed with EDS at 20 and am now a wheelchair user and on heavy duty painkillers. I really, really hope that your DD's HM improves and it is very unlikely that she will have anything like the issues I have, but I just wanted to make you aware. (BTW, just as an aside, and as your DD is only 10 this will probably be horrifying to you, but the best treatment for EDS/HM I have ever found is hormonal contraceptives! I was prescribed them at 14 to try and bring my periods under control and they hugely helped my HM. Now, all women are different, but as I said, ligaments are very hormone sensitive and so it might be worth thinking about in the future). Good Luck and I hope your DD's pain improves

Hmmm, one of my friends with hypermobity suffered particularly during pregnancy.

Stability trainers aren't all that expensive. Dd has asics (my fave trainer brand) on the alexandalexa website. They were on sale - around £30. These are essentially her only shoes. She must wear them to school. She was always in constant pain, but now have periods if no pain.

If you get trainers with the grey rubber bits, Eva foam, they provide the best stability. So, to show dd I really want to help her, I also generally only ever wear trainers also ( actually black nike lunarguide for me - after all this I realise I MUCH better on a stability trainer also).

I would also take her to a podiatrist, or ask for a refferal, if there is a problem then they can give her the correct insoles.

I would also take her to a podiatrist, or ask for a refferal, if there is a problem then they can give her the correct insoles.

Yy, dd is about to be fitted for cast inner soles, but by far that main difference came through wearing stability trainers.

Well I'm glad it was a cancellation :) But it's a shame it wasn't more conclusive.

Have the joints above and below been checked? Hip pain can be referred pain from the knee or the lower spine, in my DD's case the problem is actual her knee (the lower leg bones don't sit properly in the knee joint so when she runs, she's a triathlete, the bones move out sideways and cause hip pain). DD was seen at a sports injury clinic where they pin-pointed the cause, until she saw the sports physio every other medical professional who saw her was trying to treat her hip. The correct insoles have made a huge difference to DD's pain.

Morning all. Got a bit despairingly pissed last night, just getting over the resultant headache.

Rainbow Don't worry, I would rather hear peoples stories in full including the bad bits! I also have an EDS friend who is on very strong painkillers (the ones for epilepsy plus codeine) I def want that to be a last resort for DD but then again if it gives you quality of life then actually that is kind of just what you have to do.

Giddy thanks - more conclusive would have been great, I am in complete despair about the lack of anything conclusive.

Everyone who has talked about shoes/podiatry! This is really useful. It sounds nice and practical and is just the kind of thing that I need to know. I have looked up Asics stocklists and there is one near here that stocks the support trainers, will go this week and see if we can get some fitted. I have also drafted an email to the school asking a number of things, one of which is that she needs to be allowed to wear support trainers. Which I don't think the school will like because they are quite strict like that, although actually if they do have a problem with it, that will be bloody awful of them really and not something I would adhere to.

Last night DD and I went swimming at the pool, going to get her a monthly pass because she loved that she could exercise without pain. We live in a seaside town and have been sea swimming a lot but obviously that won't be able to last all year! She also expressed an interest in taking up weight lifting!!! She said weight lifting and swimming can be her new 'things' to replace ballet and gymnastics!
She has decided ref. dance to drop ballet for next term at least but to continue and try to see how it goes with modern. I am not feeling very hopeful that it will be possible but it seems so unfair to have to stop doing the things she loves.

Sorry for the long delay in replying standard and another - I was thinking about the DDH possibility that was mentioned by the consultant. I suffer with bilateral DDH, and at its worst point a few fees ago I was unable to weight bare, walking made me tired, couldn't sit still because the minute I did the pain would start.

Some of what Standard said about her DD rang true but the majority of my pain is in my groin/bum cheek

Thank you smoking - that your pain is elsewhere maybe means this is less likely for DD. Everything seems to be getting increasingly ruled out, making concrete 'things to do' so much harder! That is not to negate your experience with a dx of DDH though Smoking because it sounds bloody awful! Have your hips been operated on?

Yep was operated on at 6 weeks and then had to have both legs done again in my late teens/early 20's.

If it's helpful, one of the checks they do to calculate the femoral antiversion is:

Lay on stomach with legs together, bring feet of ground until they are at 90 degree angle to body, then drop each leg out side ways. Most people can't do this comfortably and their feet stop a good 6in off the floor. I can drop my feet to the floor and lay like that for a long period of time without feeling uncomfortable.

I really do hope you get a dx soon, hip pain is terrible. It must be even worse for a child to cope with

Although thinking of it, if Ehler Danos runs in your family has DD been checked to see what degree of subluxation she has in her joints?

Smoking that manoeuvre makes me cringe! Both legs at the same time?!
They have sort of done this with DD, both the GP and the consultant did something similar, she was wincing with moving the bad hip like this, the GP said she was guarding it, the consultant said she had a good range of movement, all in all a bit contradictory!

DD was in the sea for ages today, is very happy in the sea, but in lots of pain again this evening, in a warm bath for ages to try and help, which it didn't. That was one of the consultant's (un)helpful suggestions for pain relief. As if that is really going to even get close to it really!?

I just want to check out that Complex Regional Pain Syndrome has been ruled out/considered???

When I did that test it was completely comfortable, I think it pushes the ball joint back into the socket so it was pain free.

Have they looked into impinged nerves? Although that's a shooting pain rather than an ache.

Does your DD have any other medical problems?

Dd will be in lots of pain in the evenings after a full-on day. We do ice baths occasionally, but really nothing seems to help.

Dd swims and does gymnastics also. She's in a great club and she really only focuses on floor and beam - balance and core stability. I really recommend seeing a sports physio as they are good - not permanently, just for an evaluation. With dd, we are bw a local hospital and great ormond st. Tbh, neither is great, but local hospital is the best.

Nothing for us was joined up, we needed podiatry and physio TOGETHER and not one after the other. Dds pain is bio mechanical, she needs to build up her muscles to support her hyper mobile joints.

It's been almost 2 years of this for dd, started when she was 7. Earlier this year, she had two months essentially pain free. I'd say this was down to physio 5x a week and the trainers (and perhaps a certain amount of 'luck' a perfect storm of size/growing ect??). We've slowed down on physio and she's often gone shoe-free because it's hot.

She has 3 hospital appointments next week - physio, rheumotology and fracture clinic (looks like her sister has fractured her arm - currently in a splint) I find it overwhelming, much be much worse for dd.

Random - no, that has never been suggested and I have never heard of it, Had a quick Google, it doesn't really match her symptoms...which I think is good because it sounds horrid!?

Smoking no, impinged nerves not looked into, but as you say, her pain is not shooting. She doesn't have any other medical problems. Until now has been entirely healthy.

imip That does sound overwhelming, I have been feeling overwhelmed just with DDs stuff. Are you single or do you have a DP? I am usually very happy to be single but could really have done with a co-parent this week.

Going to get support trainers today!

Got her some support trainers today, hope they help. Going to the shop and getting out of the car on the way home was pretty much all we have done all day and yet she was still in loads of pain by bedtime. I don't know what to do :(

Don't despair, I think the MRI will give you answers. When is it booked for?

Thanks Another. Its not booked, and I don't even know who I would chase it with. I am not familiar with NHS structures, would I chase with my GP, the consultant, the wider hospital team, someone else? I don't know. I also don't know that I can really justify chasing after 2 days when they said it would be 6 weeks! I can't face 6 weeks of this. :(

Definitely the consultant if he mentioned it in the first place
6 weeks is not the worse it could be much worse but if I were you I'd call every day and ask if there is a cancellation - I can't believe that absolutely no one will cancel! Is the hospital in London at all? Because of the tube strike this week there will be cancellations for sure. Can you call say the pain is unbearable and are willing to travel further if there is a last minute vacancy?

Nowhere near London. Will call them tomorrow, I did think that surely people will cancel MRIs, like anything, I want them to know that we can get there if they do cancel! IDK if it is standard but because she will be having the dye, he did mention something about the line in her hand being put in by someone who is something to do with paediatrics rather than the MRI people (no idea on technical terms!), I'm not sure what that was about, whether it is normal, or whether that complicates things!

Seriously, the wait is fucking awful! I often got my GP to intercede for us when we were getting nowhere (eg, fell through the cracks as we were between two hospitals as initial JIA diagnoses could only be dealt with at GOSH). They were pretty helpful tbh.

I hope the shoes help, it wasn't instant at all - about 3 months. You really should be referred to physio and podiatrist. I've even now demanded an OT to see dd at school as they were trying to keep her inside during playtime because she struggle do of get downstairs without pain! Not sure how it will go, but it's worth a shot.

I do have a dp, who is pretty helpful, but as a SAHM most of the grunt work falls onto me. I have 3 other Dcs younger than dd. dc2 is 7yo and in the next couple of weeks will be assessed for ASD. In a sense, dc2 is my biggest challenge. Getting a diagnosis for her has been a 2-year saga. I'm pretty sure the world thinks I'm pretty neurotic. Sadly, I think the NHS may be great in some areas, but for us, I've pretty despondent about it all. Over the next three weeks, I have a total of 7 hospital appts for dd1 and 2!