day 6 of hip pain in dd8, what would you do now, any doctors out there?

[piratecat]

I am following on from my other thread on this posted beginning of last week.

DD's hip is STILL awful, but although i havebeen to gp twice and A+E once late last wednesday, and given calpol and ibuprofen it's still hurting.

We are booked for an xray on thurs. I am totally stressed out becuase i have no idea what's causing this , although the visit to a+e (where they sort of looked at me like i was mad) said the following

1. could be bursitis.
2. wasn't infection (which of course is good)

GP number one, said 'might be to do with her clicky hip' but can't tell. I'll get her an appt for orthopedics ( this is end of feckin june)

GP number 2 said, 'it could be inflamed', just give her the anti inflammatories.

On searching around, there is talk of post viral things that can affect hips, knees etc.. DD had a flare up of some sort on her vagina/labia in the preceeding 5 days to this hip thing. Not diagnosed as thrush, or bacterial, but after 2 days they gave her v strong penicillin anyway.

we are oficially pissed off and feeling helpless here.

Gp 2 said if it's not got any worse send her bacl to school on monday. well it's not got any better so what do i do ffs.

sorry am just totally fed up now of seeingher in pain.

pain gets worse on lifting to say get in bed, or in car or up stairs. so have had to carry her alot. Two nights ago the pain was coming like contractions for one hour.

any doctors out there???????

realises this is not a short summary!!

Sorry to hear you aren't much further foward yet, hopefully the MRI will be more conclusive.

In DS's case too the hip pain would come and go and I think there is a tendency for doctors to dismiss intermittent pain as being something else (ie psychosematic or referred pain) because it's hard to pinpoint the cause.

However, when we finally got to see a top orthopaedic guy, he said at once, well d'uh, of course it's intermittent because the joint is slipping in and out of the socket. When it's in place, there won't be any pain!

Now I've no idea whether your DD has something similar to what DS had, but what I would say is that you know her best and if you feel in your heart of hearts that there is a physical problem, insist they keep investigating.

thankyou mattelie. I will make sure i keep on top of this. as u say, the xrays showed perfectly in 'place' hips!

radiographer has to have a look monday.

Oh, piratecat, I am so sorry you are having such a rough time.

With hypermobility it is absolutely normal for pains to come and go. Dd use to spend part of her time doing ballet and part of it in a wheelchair. That is what the condition is like. And scans do not necessarily reveal hips out of place. The pain can arise from movements of the hip that happened days ago, or just from general overstrain trying to keep the joint in place.

It is also normal for patient to present as very anxious. Doctors are very fond of the idea of pain arising from emotional trauma, but don't always realise that pain can cause emotional trauma. Intermittent pain typically makes people very anxious: they don't know what is going to happen from one minute to another, and in your dd's case she doesn't even know what is wrong- of course she is going to seem anxious!

If the pains return and nothing shows up on the scans, what I would do would be to go to GP and ask for referral to a rheumatologist. Your dd should be tested on the Beighton/Brighton scale.

hi cory. they dismissed hypermobility pain becuase it's only one sided?

tired today x

sorry to hear that it's still ongoing piratecat - hope the MRI shows something up so that you can at least know what is going on.

Keep battling - it doesn't matter in the end if they think you are overzealous, so long as they don't ignore what you're saying.

Good luck - keep us posted.

piratecat Sun 16-May-10 11:28:58
"hi cory. they dismissed hypermobility pain becuase it's only one sided?"

In that case they haven't got a clue what they're talking about, sorry.

Not saying it is hypermobility, but that is a ridiculous reason for them to give you! There is nothing that says that hypermobility has to cause all your joints to hurt at once; the pain is often due to some damage done through the hypermobility, such as slight tear to a ligament, because you've moved a joint in a way you shouldn't- there is no reason to think you have to be damaging all your ligaments at once. Even strain caused by hypermobility is not necessarily on both sides: I get a lot of pain in my right wrist and not in my left- presumably simply because I am right-handed, so putting more strain on that.

Nor do all joints have to be equally hypermobile. Ds' left hip is far more hypermobile than his right (as has been thoroughly investigaged by paed and physio) and it also gives him far more trouble. He never has hip pain on both sides simultaneously, which is why he is able to get around using crutches. In my case my outer finger joints are ridiculously hypermobile, but the other finger joints are hardly hypermobile at all.

Not saying, you understand, that you should insist on a diagnosis of HMS, only that these people don't know what they're talking about.

cory hi, i just swear to god it drives me drackers that they can make such a sweping statement about hypermobility.

i am not having much fun here, the pain is back this evening. niggling today, but bad tonight. in hosp it died down to nothing.

wtf do i do now. they made me feel like i was imagining it last itme, well not all of them but you know wat i mean.

I know all about that one, piratecat: in our case, the paed told us categorically that there could be no organic reason for dd's pain since nothing was showing up on the X-rays, that it must be a psychosomatic disorder, and then he started speculating about her having been sexually abused (to cause such a severe trauma as to imagine that you're in pain even when the Big Clever Doctor has told you that you aren't .

I am still glad I persevered as both dcs have now been diagnosed and need a fair bit of support.

Besides, even if it had been psychosomatic, I would still have needed to get her out of the clutches of Mr Cleverclogs and into the hands of people who could actually deal with it. When I looked him up later he was an expert on allergies.

cory, its crap to say the least.

We had major pain last night, and today it's mid scale. I have rung HDU and explained, they said it's up tp ME wether to bring back in or not. They gave me the ortho surgeons number and his secretary will pas onthe message ans also getback to me with something, albeit reassurance, or news onthe mri resluts.

At this precise moment i have no idea what to do. if they would only e able to examine her whenshe's in the terrible pain, but that died down after admission last week. hence theri conclusion it's consti bloody pation, or psychological.

so Head honcho's secretarty rang to say mri shows nothing up. good news .

iam to keep her rested, but mobile (how?) and if by wednesday there is no improvement or it gets worse to ring secretary direct, as there is a nother doctor in that day who is also supposed to know what he's talking abuot.

meh!

Just finnished reading this. What an awful time you and dd are going through.

I have to say it does really annoy me when doctors try to suggest that pain and symptoms are psychsomatic just because they haven't found anything yet. A similar suggestion was made about ds today.

Good news about the mri, lets hope the pain either dissapears or that they find what is causing it soon.

I completely echo what Cory has said ? our DS would have no idea whether, on any given day, he would be able to play sport or not. A sporty child is likely to find this uncertainty hugely upsetting and distressing. You might politely point out that their failure to find the cause of your daughter?s pain is also causing her considerable anxiety?

As I mentioned before, not all these diagnoses show up on X-ray ? have they done any gait analysis or motion control? Get your daughter to lie on one side, bend the outer leg at the knee then, holding the knee in place, use a rolling motion on the hip joint (Warning: this caused DS to swear very loudly and kick the doctor in the face).

If that causes the pain to flare up, I?d be tempted to do it just before you go in to see the docs next time?

ok going back in pain unbearable.
x

back from hosp, got to go back in morning. great doc tonight although we had to wait 5 hrs. he saw us friday . he will brief team and see if anyone can help us 2morro.
x

The good news is, if it is hypermobility then they should be able to examine for that whether she is in pain or not at that precsie moment, if they know their business, that is- which is a big if. Keep repeating the word "rheumatologist"!

They should measure her against the Beighton/Brighton scale, bearing in mind that you can have hypermobility syndrome only affecting a few joints, they should also be looking at the stretchiness and texture of her skin, any evidence of funny scarring (doesn't have to be present for HMS). And they should do cardiovascular tests, as hypermobility can be part of a syndrome (Marfan's) which also causes cardiovascular problems (but more often is not).

oh my fucking god.

We saw a doctor, who was very very scathing, and very uncommunicative with me. She thought she was totally IT.

her, we can't find anything wrong.
She got up on the bed ok.

me, well, what about some physio to help whatever is causing this.

her
I thought she was having physio onthe ward when she was in last week.

me-no noone has mentioned any physion, where do yuo get that from, is it in her notes, should she have been/

her, no i just thougth she was, would you like me to refer her for some.

me-I DONT KNOW, here we go again, you are all asking me what to do. This is ridiculous. What about seeing a rheumatologist, i know someone whose children have hypermobility syndrome, and whilst they are at the other end of the pain scale, maybe thats the way to go?

her-Oh, i don't know about that, but i don't think it wil help in this instance, but i will refer herif you want.

me-what about a chiropractor or osteopathy?

her- none of that is medically proven to help, it makes no difference and most of them are money grabbers. All alternative stuff like that is not proven to help.

me- I cannot belive you are saying this, you are really telling me as a mother , that you advise me not to go down that route. is that what you belive or all alopathic drs belive,

her--it's not proven.

me -what about accupuncture?

her-oh someof that has been shown to give relief.

me-- OH GOOD becuase my gp reffered mw to my local physio dept where i recieved some accupuncture sopme yrs ago.

her-I also thik she should come off the pain killers, unless there is the big pain hit.

me, so why did the doc last night tell me to keep givning them to her regularly.

her -- it's not good she is building up resistence. (to whic i could kinda see)

me-so thats it then, no more can be done.

her -maybe you shudl consider taking her back to a counsellor.

me--maybe i will, but she has gone thru alot of stuff with her dad, that hasn't resulted in this, so i don't agree that emotional upset is the whole cause.

I left., almost in tears. I spoke to head nurse who was really shocked she'd said all that stuff, and suggested i make a formal complaint. I said i have no energy right this minute. She said, well inmy view, if your daughter gets in that severe painagain you are to come right back in, and i said no, whats the point, they all think i am fucking mad. She said no, she needs to comein if she's in that much pain for pain management.

lets hope it goes then eh.

oh my fucking god.

We saw a doctor, who was very very scathing, and very uncommunicative with me. She thought she was totally IT.

her, we can't find anything wrong.
She got up on the bed ok.

me, well, what about some physio to help whatever is causing this.

her
I thought she was having physio onthe ward when she was in last week.

me-no noone has mentioned any physion, where do yuo get that from, is it in her notes, should she have been/

her, no i just thougth she was, would you like me to refer her for some.

me-I DONT KNOW, here we go again, you are all asking me what to do. This is ridiculous. What about seeing a rheumatologist, i know someone whose children have hypermobility syndrome, and whilst they are at the other end of the pain scale, maybe thats the way to go?

her-Oh, i don't know about that, but i don't think it wil help in this instance, but i will refer herif you want.

me-what about a chiropractor or osteopathy?

her- none of that is medically proven to help, it makes no difference and most of them are money grabbers. All alternative stuff like that is not proven to help.

me- I cannot belive you are saying this, you are really telling me as a mother , that you advise me not to go down that route. is that what you belive or all alopathic drs belive,

her--it's not proven.

me -what about accupuncture?

her-oh someof that has been shown to give relief.

me-- OH GOOD becuase my gp reffered mw to my local physio dept where i recieved some accupuncture sopme yrs ago.

her-I also thik she should come off the pain killers, unless there is the big pain hit.

me, so why did the doc last night tell me to keep givning them to her regularly.

her -- it's not good she is building up resistence. (to whic i could kinda see)

me-so thats it then, no more can be done.

her -maybe you shudl consider taking her back to a counsellor.

me--maybe i will, but she has gone thru alot of stuff with her dad, that hasn't resulted in this, so i don't agree that emotional upset is the whole cause.

I left., almost in tears. I spoke to head nurse who was really shocked she'd said all that stuff, and suggested i make a formal complaint. I said i have no energy right this minute. She said, well inmy view, if your daughter gets in that severe painagain you are to come right back in, and i said no, whats the point, they all think i am fucking mad. She said no, she needs to comein if she's in that much pain for pain management.

lets hope it goes then eh.

sorry oops

Deep breath, piratecat Very frustrating. But it sounds like she offered to refer you to a rheumatologist ?if you want?. Say yes, it is what you want (it can?t hurt and may help).

Secondly, she offered to refer you to a physio ?if you would like?. Say yes, you would like! This would almost certainly happen quicker than if you get the referral through your GP.

This doc sounds a little out of her depth, so take her up on all her offers to refer you on to other people.

lol, i need wine more than breath right now mattelie!!

my main prob is that i had to suggest it, any of it. She thought dd was getting physio, i am very cross if it should have been done whilst we were in there, but wasn't iyswim.

am i allowed to name and shame. cos this is not the first shite exp me or my family or friends have had in this hosp.

grrr!!!

PirateCat, this sounds awful - so sorry.

Do you have an orthopaedic consultant? Or will the appt for the end of June be the first time you have seen them? Either way, I think I would see if you can get an earlier appt - call the admissions desk and ask to be offered any cancellations, and look up the e mail address for the consultants secretary on the hospital website and explain that your dd is in severe pain on and off, and ask if there are any cancellations.

Don't worry about the physio - it sounds as if the Dr you saw today was talking off the top of her head and just assuming there would be physio - but unless you have been referred for physio for a known condition, I would leave it - physio can actually make some things worse, and if there isn;t a dx, then what is the physio for? Also, personally I wouldn't take a child to an Osteopath etc unless the cause of the pain is clear, and known to be something that osteopaths treat.

Frustrating though it is, the nurse is right - and you hould go back as often as you need to to get the pain management improved.

I am surprised you can build up a resistance to pain relief - DS was on paracetamol, ibruprofen, codeine and amiltryptiline for over 9 months (for othopaedic surgery) and didn't 'build up a resistance'.

Really sorry, this must be frightening as well as exhausting, and I hope you get some answers and your dd gets some relief very soon.

Can't comment on it all right now but and at the treatment of you and your dd.

The resistance to pain relief thing is bollocks tbh unless your dd is on significant amounts of opiods eg morphine.

hello there.

we saw the orthopedic surgeon guy whenwe were there, he was time short, but showed honest concern and said the results of the mri were normal. Is this who you mean?

i only ask becuase in the past my dd has also been to ortho outpatients, for shoes to straighten her feet.

Oh, I thought you had posted that you have an orthopaedic appointment coming up in June.

What hospital is it, PC? I wonder if you can get referred to GOSH or somewhere - what part of the country do you live in?

(I am no expert in any of this.)