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???????

Oh, piratecat, that is so sad.

When dd was going through a bad patch she used to ask me to close the windows so the neighbours wouldn't hear her scream when I lifted her onto the loo. Afraid I totally give up on the idea of baths when they are bad, though that is probably a pity, as warm water might be soothing.

yes dd is still having spasms of pain now.

i got her dressed about 2 hrs ago ready to go to a+e, but it was her who said, 'but what can they do mummy, we will just be tired, and i can't sit in the car that long'

not sure how tonight will go, i just want her to sleep.

Poor little thing. If it is pain from hypermobility syndrome, then she may well have a point about A&E, not a lot they can do ime. Except possibly help you with a referral to a rheumatologist. But of course you want to eliminate all the other possibilities first.

thanks cory, yes i have read up that painkillers don't help much with this.

I spoke to the head teacher today, and i was going to see if she could do a few hrs in school tomorrow. She seems okish in the mornings, then by afternoon, alot better, it's the evenigs which are worse.

is this your experience, cos i have also been reading that hypermibility syndrome can be like this in terms of night times being worse? I know your dc's have a much worse type of this, but do they have any time in education/ x

actually i mean to say anti inflamatories dont help much but painkillers do?

Both my dcs do attend school, just rather irregularly atm . But they were both at school today which was good, and ds even went to a party afterwards. They do have long periods when they do go to school normally and aren't troubled by pain at all. It's the unpredictability that makes it difficult really. But I still have hopes that dd will one day get to a more or less normal timetable- perhaps even before GCSEs.

It seems like mornings and evenings are the worst times: mornings worse for dd (not a morning person at the best of times) and evenings for ds- I suppose it's when you're tired and most vulnerable.

Dcs tell me that painkillers don't help much either, but I wouldn't take their word for it. Dd is allergic to ibuprofen, so can only take paracetamol anyway and it doesn't seem to do a lot.

thanks for your answer, am glad they had a good day today. How are the school with it? I know you are in a different boat, but it would be to hear how your school helps, or what it's policies are re attendence. x

Very varied experience I'm afraid.

Dd's junior school were awful; old headteacher was a bully, who didn't like disabled children at the best of times and was dead set on his attendance record. Dd had a hard time of it, and so did I. It was pretty obvious that his intention was to bully us into leaving. In the end it was the head who left- for health reasons! (no, I didn't hurt him, honest!)

Ds is still at the same junior school, but they are far better now the head has been replaced. It has taken some time to get actual help sorted, but it is now happening and they are ok with his absences (they have been warned!). Ds has seen an occupational therapist who has made lots of useful suggestions for school. His teacher is making suggestions for work for him to do, and I try to keep him busy at home. I expect the Education Welfare Officer will be along one day, but I feel strong enough to cope with that now.

Dd's secondary school are absolutely lovely and have been from the start. They knew before we applied what they were getting, as we went in to see them and were very frank about the situation. She catches up on the work as best she can, and they use different attendance targets for her, as she has chronic problems. She has also had counselling as many years of struggling to be diagnosed have left her a bit emotionally fragile. Basically, I'd say she gets any support she needs.

I hope your dd's school will prove equally supportive. I think it would help to go in and see them, explain the situation, tell them it may take some time to get a diagnosis, do not make promises re improved attendance that you may then be unable to keep (that was my downfall), and ask what you can do to support your dd at home.

Cory, thanks alot for your reply. I had to sleep last night (when they sleep you do type situation)!

So you have had a struggle, sorry to hear that, you do have to be firm don't you.

DD is asleep still. Yesterday afternoon i told the head I would try and get her in this morning. That was before the 4 hour pain drama of last night. last night I told dd we'd be straight to the hospital this morning. What do I do if she seems okish, just feel like they all thing i'm lying. Or do i wait for thursday's proper appt?

If the appointment with the hospital involves a proper sitdown talk with a consultant, then you could wait for that- if not, I would take her to the hospital today.

It may well be that they think you, or she, is lying or exaggerating or whatever. That, unfortunately, is one of the occupational hazards of motherhood. Just ignore and do what you have to do.

I would mention to them that she is very hypermobile and that you know that this can cause severe pain (mention hypermobility syndrome), but that you feel that all other causes need to be ruled out first. Bloods should be taken etc.

Do not be afraid to tell them about how much pain she is in or how limiting it is for her. Also, do not let yourself get flustered if they point out that she looks perfectly ok/doesn't seem to be in pain now/is actually able to weight bear. Fluctuating intermittent pain is perfectly normal with hypermobility syndrome- and possibly with a number of other conditions that they haven't yet ruled out: it is not proof that the pain was never real.

If they seem clueless tell them you want a referral to a rheumatologist.

thanks cory, you are being such a rock at the moment, when i feel as though i am going a bit crazy.

i am going to guage this on how shefeels when she wakes up. Mind you, I KNOW she will be medium, but then by tonight she's be thr the roof. Or do I -see what I mean!!

gotta smile havent you, otherwise you might just as well drink a bottle of vodka.--yes I'm tired x!

Good luck with today!

I do understand how tired you must be.

made an executive decision, we are going back to A+ E and i want answers.

If everything else has been ruled out (that needs to be done first!!!) and they then try to tell you hypermobility can't possibly be causing this much pain- ask them to be referred to Great Ormond Street Hospital or for them to contact GOSH; they are the experts on this.

Any news piratecat?

My friends 9 yo son has had something which sounds exactly the same.He was admitted and had loads of tests.In teh end they said they thought it must be a virus because they had rukled out everything else.They drained it a few times which gave him some relief and then it would gradually start building up again.However several weeks later it is now getting better.

dd got admitted yesterday. it's been so f ing tiring. Ihave just driven home the hour journet to get together some stuff.

waited for 12 hrs yesterday, saw different people. so understaffed, but all good as gold. nothing found in blood. xray fine. Thikn we got 3 hrs sleep. fun! not.

want to do mri, as soon as slot available.

ok, have to go back as another hour drive and need to get keys given to family, as i left in such a hurry.
xxxxxxxxxxxxxxx

thinking of you and your DD piratecat, let us know how you're getting on.

Sending good vibes, let us hear how you got on when you get back!

I do hope that they can find something, piratecat, so that she can be treated.

Did you take notes of the various things people have mentioned on this thread to ask them about, just in case it hasn't crossed their minds?

((hugs)) to you both - hope she doesn't have to stay in long.

Just read this through for the first time and do hope all is ok. When this is all over you should write a letter to your local A and E. The fact that your little girl had been on antibiotics should have made them super cautious about assessing her as this could have masked signs of infection. They need a teaching session on hip pain in children. I really hope your little girl is alright. Paediatricians are taught that if the parent says something is not right LISTEN to them but doctors without paeds training can sometimes overlook this important rule! Hope all is ok.xx

All the best wishes to you piratecat. Hope your little girl is going to be ok.

piratecat, so sorry not been able to get on line for a couple of days. It's possible that an x-ray wouldn't pick up the problem, yes, so it's good that you're getting an MRI done.

The reason DS's hip pain flared up was that the joint would ease itself out of the socket, be extremely painful, then ease its way back in and voila pain would cease - until the next time.

Fortunately, being a physio, I was able to insist there was a real problem so stick to your guns.

PLease come back and update us when you can x

Any news, piratecat?

hello.
we are home.

short summary as i am exhausted.

Sat for 12 hours til we got a bed. 4 hours a+e, then 8hrs waiting for various procedures of getting into the kids ward, onto the ward. Being checked in, being asked to repeat the entire scenario over and over about 4 times. This to a nurse, a paediatrition, a nurse.. eventually having been told at 8pm tuesday the ortho gut was going to see us, we were told at 1.00 inthe morning he wouldn't be.

Ok, so we got into bed, and the pain was pretty awful. not helped by the wait i guess, nor the tiredness and the examinations. She was hysterical by then (having had also to have had a blood test without the numbing cream) cos noone bothered telling the nurses she needed one till the blood person came!!

In the end they gave her kids morphine.

We got oooh 3 hrs sleep! Next day (wednesday)ortho honcho came. They all just said it seemed a mystery, as xray fine, bloods fine. But said we'd get an mri. We waited till friday (thats 2 days) on the URGENT list for this mri!! Between theis time dd had started with abdominal cramps and severe consitpation. So had alot to conntend with. The of course the hip started to feel better, but the tummy worse, so then they were syaing it was constipation all along, but reffered pain ????!! I said noone had mentioned that, and that i didn't think it was at the beginning, not one bit.
To be fair, her symptoms were lessening, and she has fantastic movement albeit painful movement in her hip. It was alos noted the dd seemed not 'quite right' ie emotional. I htin they picked up on her stress, and then i said she did have a major shock with her father the day before any of this happened ( ie the labia thing, the anitbiotics). The 'pain' nurse reckoned it was that then, and that it was real pain but also from emotional trauma. I am not adverse to the notion, but still i didn't think it was wholly that. Yet i started to get the feeling that the discussions round the nursing stn were of me being a bit of aprecious mother tbh, or it may have been me just being sensitive.

all in all not a great exp, but most of the nurses and ladies who did the obs were really lovely.

So. They said we could go home yesterday, but as we were about to go, one dr said he wasn't happy that dd was still having the tummy pain, and demanded a suppository be given (to dd not me!!)and then a nurse came on for night and said she'd rather we stayed till dd had a poo.

Dd didn't have a poo, still hasn't, but another dr this morning said, i think you'd be better off at home, cos the pain has gone down so much. so here we are. Oh we went to the supermarket onthe way home and guess what, dd's hip started playiong up again. ffs

The mri results will be ready next week, and someone will phone. if the pain gets worse in her hip within 72 hrs we can go straight back. if it goes away and the results show nothing then whoopeee. if the results show nothing and the pain returns, its, um back to the drawing board i guess. Oh, we have an ultrasound booked for 2nd june, which tbh i hthought they'd do whilst we were there. but what the fuck do i know.

grrr