hip pain continues in dd8, cory, pushki, mattelie, need hand holding here!!

[piratecat]

hiya you may remember my thread form a few weeks back.

it's long but here it is

dd came out of hosp week and a half ago. nothing diagnosed, had the last flare up week ago monday.

then yesterday and today has had 3 bouts.

gp again,no help, said irritable hip, whichis transient synovotos, but the hops said they didn't thik it was.
talk about confused.

anywya we have a physio and an orthopedics aptt next tues. i am gald of that as hospital test show nothing and gp is rather fed up of us now.

just needed to come back and get supprt, cos school are a bit . At leat to, yesterday her teacher witnessed an attack, and was shocked by intensity.

Sorry to read this. DS is 8 and has bouts of transient synovitis, which are pretty easily managed by rest and ibuprofen, so I can see why you (and the hospital) are doubtful about it for your dd. I hope you get some answers soon.

hiya

thing is the hosp said it wasn't she can have a few days of normal activity, then bang, excruciating pain

is this how it happens for your poor dc?

Well, for DS it really is transient. It first started about two years ago, and he complained of a sore hip for a few days, and we sort of just made sympathetic noises , but then he woke up one morning and was unable to walk, which was rather scary. We took him to the GP, who referred him for an X ray to rule out Perthes and some other things I shouldn;t have googled. X ray was clear, we were advised rest and therapeutic doses of ibuprofen, and it resolved. And it flares up now with no warning, and we do the same. Complete rest, max dose of ibuprofen and it resolves in a few days. Of course, he is 8, so complete rest sometimes goes by the wayside at school, and it flares up again.

gosh, i know how difficult the whole thing is. thanks for your reply.

DD's pain is at about a 4/10 today, which it was yesterday, too when at rest. But yesterday we had two flare ups, and thats excruiciating for her. i wanted her to go to school, but she's limping a bit, so i just know it will cuase a flare up.

dd has had weeks off now. no diagnosis as of yet tho.

how muc time did your ds have off when it started/starts TFM ?

i don't think its thiesynovitis thing. does your ds have pain down theside of the thigh?

With dd it's like a sharp cramping/poking pain.

Has Perthes been ruled out? My goddaughter had this - it involved complete rest for quite a long time, then minimal activity. She is a teenager now, and has completely recovered with no after effects at all, but it was a long slow process.

I mention it, because if there is a chance that it is, she should be resting it as much as possible. Sorry if I've missed huge chunks of information and it's been rules out already.

hi seeker, thanks. i need the suggestions. No, the biggies have been ruled out.

She's had

xray
blood
MRI, nothing found at all. So so annoying. I know i might not get an answer, and they have said as much, but knowing how to ,manage it is the bugger. At the mo i am thinking rest, becuase thisis how it was 4 weeks ago, when it was on/off. Then we had 4 days in hosp, regular meds of calpol/brufen. it went away?

we got sent home. 10 days on we are back to square one!!

i know i''ve much t be grateful for , but i need a break lol. The thought of a coffee on my own in a cafe--WOW !!

Hello again. DS hasn't had much time off school at all, because he would really much rather be there than stuck at home and the school are pretty good at encouraging him to rest. Possibly more effective than me
He had a few days off for the original bout, and then the odd day here and there, but mostly he is able to, and wants to, attend.

He does have pain down his thigh, but mostly in his hip. He says, and I think he might be right, it's difficult to tall what comes from walking funny and what is the "original" pain.

I do hope you get answers for your DD. We were lucky I think in that we had a clued up GP, a very quick referral and a pretty straightforward diagnosis.

piratecat Wed 26-May-10 22:32:58

"thing is the hosp said it wasn't she can have a few days of normal activity, then bang, excruciating pain

is this how it happens for your poor dc?"

This is exactly how it is for both my dcs and has been for years for dd, for just over a year for ds. Football one day, bed the next. Sometimes an episode can last for weeks, sometimes for 5 minutes. Totally unpredictable. Usually worse in the mornings and late at night: afternoons usually the best time.

Though I have to say, dd is much stronger now than she was a few years ago and episodes far less frequent.

My take on it is, I will send a child to school if they are able to sit upright. I try to organise crutches or a wheelchair or whatever it takes for them to get around, but will only really keep them at home if the hip or back pain is too bad to allow them to sit- seeing that classrooms do not contain learning couches.

Oh Goodness Piratecat,
completely missed this it fell off threads I'm on,
so when you say all the biggies have been rules out does that include Juevenile arthritis?,
poor thing she must be very grumpy and fustrated,

can I also say get the doctor to play around with the anti inflams,
dd was on nurofen when she was a toddler, then moved on to feldine melts which were like a step backwards shes now on voltoral, whereas I know someone else who prefers Feldine melts

hiya, i stupidly have no idea if the mri would have shown up juevenille arthritis.

i asked ot be reffered to a rheumatologist as cory said ( i think) but still wating anything form hosp onthat score. i will mention it next tues at the physio and ortho appts tho.

my old thread had dropped off, thats why i made this one. A week on form the last flare up i really wasn't expecting this!

cory, lets hope i do get some answers. I emailed head of school today outlining it all, the recent events.

all i can do for now.x

all 3 gps have been shit btw, i will see what they say at hosp and hope i have info to go back with

My dd didn't have a mri, she had blood tests done in casualty and
tbh I had a 5 day old baby can't really remember exactly what happened but he did say o shes a mystery nothing standing out on blood tests, so don't exaclty what they ran, but he referred her someone else,
who took one look at her results and said she needed to go see her current consultant who is an expert in JIA

I do know somebody who was sent for MRI and then eventually diagnosed with JIA

tbh my gp was abit crap too, he just said yeap your right shes definitely limping, if it continues or gets worse bring her to casualty,
just remembered they did do an x-ray

Think the MRI would show up J arthritis as it involves joint changes, not positive though. Did you raise the Ehlers Danlos or Joint Hypermobility option with your GP? The pain coming and going would be typical, especially after "activity" of school, not sure about the level of pain she is experiencing though. I am so sorry you are going through this.

Level of pain does not seem impossible with Ehlers Danlos/hypermobility. What used to happen to dd when she had an episode was that her muscles went into spasm and that was very painful. Also, the mere scariness of it all will exacerbate pain. Even ds who is not given to panic attacks has been known to lie quietly sobbing to himself.

gp who i normallytotaly respect has basically just hmm'd at everythingi have said. knowing full well probably that she hasn't got a clue.

IS IT transient synovitis, dd has a slight sore throat. i have jst come bac k from her room, having videod a flare up episode. Weird but thats how desp i am for them to see her at her worst. she was screaming with pain.

I rang the ward she was on a couple weeks ago, and of course as we are not within the 72 hrs limit, she can't help.

She said for me to go back to gp, or go back to A+E again, and start all over again. dd is more settled right at this moment, but how long for. I could weep.

Piratecat - if you want to find out more about JIA might be worth calling Arthritis Care's helpline (0808 800 4050 Mon-Fri 10am-4pm). Online, there's this Chat Guide for Parents as JIA is basically an umbrella term for various sorts of arthritis. Really hope you get something to work with soon re a diagnosis, I feel your frustration with the system and for your poor DD's ongoing pain...

thanks numpty. i had alook but none of the symptoms they say there seem to match any of dd's. thanks tho.

One other thought is whether it's Reactive Arthritis - I know someone who got this age 20 so I guess it could happen at any age.

i'm thinking a neurological pain, like nerves/migraine type thing?

i will say that to physios tues. i videod her tonight, i need to show them what its like.

well thurs night was the worst i have seen her. just awful. i even rang the hospital in desperation. of ocurse would have to go thru A=E again, and justno point as they couldn't help on the ward last time could they.

friday, was not so bad, and today slightly better. tho she has had another flare up tonight. why so much at night i wonder. she's done nothing today save walking round the house.

yet another 25 mins of extreme pain, I just sat with her and cried along too. Felt selfish, but I just lost the ability to be the strong one.

I am so sorry, don't feel bad for crying too, you have both been through so much. I know it is hard but I am sure there are answers out there for you, and something that can help.

Have you got a date for the appointment with a rheumatologist and a physio yet? May be you can chase those up so you at least feel like you are doing something. I have found that trying to get hold of the Consultant's secretary is a great way of getting an earlier appointment. If you have to go back to a&e can you demand to see a rheumatologist, preferreably a pediatric one before you leave? Have to say that North Staffs where we are have been fab like that for our ds.

Are you keeping a diary about when the pain comes, how long it lasts, if she has had any physical activity etc?

Haven't got any other ideas, but i am sending you a big hug!

This all sounds a bit grim piratecat. Have been reading but other than the initial suggestion of irritable hip have had nothing to add.

I do think though that if it's a very intense pain then it's possible more likely to be a trapped nerve or something similar (which would explain normal x-rays)

Would a tens machine help with the pain do you think?

Does it flare once she's in bed (is it positional?) and are you giving anti-inflammatories all the time or just when it's painful?