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Dd7 initial jia diagnosis, now biomechanical issues?

(16 Posts)
imip Sat 16-Aug-14 06:31:24

Dd 7yo had pain in her right ankle from jan. Constant and pretty painful. Can't sit down with legs crossed, can't swim, steps are a challenge. Frequently by the end of the day she is in tears. Around march, she was diagnosed with Arthritis. Has been given physio exercises, she initially did them but the pain has become to much for her. I keep her really active otherwise as advised, but struggle to force here to do this

The next step was steroid injections at GOSH, however they now say that it is not arthritis but a biomechanical problem. In June, the pain also went to the other ankle. I understand that this might not be arthritis as we need to change treatment, I just wonder whether anyone else had had a dc in a similar position. The treatments are quite different, so something I want to make sure is right.

The biggest issue I get is that dd is still on lots of pain. While everyone is shifting us from hospital to hospital, she is still suffering, now almost into her 9th month. I'm not an aggressive person (far from), but I complained about the wait last time and managed to her her ultrasound on the same day as her appt - last time I had to wait another three weeks.

As it stands, we don't have another appt now til end Nov, and a referral has gone to physio at GOSH. I'm a little exasperated by it all, and of course, it is of no help to go who's had a shit year in pain, and really being emotionally affected by it all. Anyone else have any wisdom to share on this?

imip Sat 16-Aug-14 06:32:23

Forgot to mention that she is on naproxen ATM with lansoprazole cover. And hay fever medication ... Poor thing...

imip Sun 17-Aug-14 12:26:25

Bumping ... Anyone?

MyFairyKing Mon 18-Aug-14 20:15:36

Has she not been prescribed any actual medication for her JIA apart from anti-inflams?

imip Mon 18-Aug-14 20:56:36

Only naproxen... It's been rubbish, so we were waiting for steroid injections. The ultrasound found she had no active inflammation, so not a candidate for steroids. In my mind, the next step was the methotrexate infusion.

The curve ball was the suggestion that it wasn't jia at all. Consultant we saw seemed to believe that it wasn't jia, and supporting that was the lack of inflammation and the fact that the got little pain relief from naproxen.

Bunbaker Mon 18-Aug-14 21:17:38

If it isn't arthritis have they come up with any other suggestions?

DD is under the rheumatologist for joint pain. They ruled out arthritis, but was diagnosed with Chronic Recurrent Multifocal Osteomyelitis. It is pretty rare (and manageable). Could you ask your consultant to consider whether it is this condition?

imip Mon 18-Aug-14 22:10:49

That's interesting, bunbaker...

No, the only other thing they have suggested is that it is a biomechanical issue. This would involve a referral to physio (she has already been seeing one, this would be a gosh). She'd possibly need to be an inpatient for a week for intensive physio. I'm curious to explore more options, as it seems we are being passed from pillar to post, and 8 months later, we still have no diagnosis and are waiting on another referral ... Whenever that may arrive!

Bunbaker Mon 18-Aug-14 22:32:23

What tests has she had?

DD had:
An ultrasound scan
An MRI scan
A bone biopsy
A bone marrow aspiration
A full body scan
A CT scan
A weekend's worth of urine for them to test
Countless blood tests

It was exhausting and worrying, but once we got a diagnosis and a treatment plan sorted out, DD improved massively.

imip Mon 18-Aug-14 22:49:40

Only X-rays and ultrasound. And a lot of blood tests! Dd doesn't like these, she vomited over the nurse once!

Am I right in thinking that the other tests your dd had was to eliminate cancer? I understand that is part of the diagnostic process, but not one mentioned to us?

A friend of a friend... Is a physio, private practitioner, however has loads of experience in the NHs treating jia. I'm thinking of booking a one-off appt with her to get her thoughts on this, as well as arming me with the right info to talk to the drs about.

Bunbaker Tue 19-Aug-14 06:49:36

Yes they were. It was a very stressful time for us. The blood tests were awful. DD is now needle phobic. Once one of the nurses tried and failed to get a cannula into DD's hand. She fainted and so did OH.

DrewsWife Tue 19-Aug-14 07:46:46

My dd has Enthesitis related arthritis Basically it attacks the ends of her tendons. Enthesitic points. So her arthritis hits ribs, collar bones etc.

It is huge amounts of pain. Very little inflammation. It was spotted after much ranting from me. A doc saw her. Didn't think it was arthritis. But MRI shows up the inflammation.

She has all joints affected as she also has psoriatic arthritis. Which has affected her joints and she has a few fused. And a few under grown.

Blood tests show hla b27 +.

Naproxen whilst a great anti inflammatory won't keep it pain free. It's nuts to think it will.

Dd uses paracetamol, brexidol which used to be called piroxicam (anti inflammatory)similar to naproxen. Methotrexate. And is also on an anti tnf. Hers is Toccaluzimab which is given by drip. 4 weekly.

She still has pain issues.

We find alternating heat and cold. Swimming and gentle yoga helps.

We bought a wii fit and found surprisingly it helped her with her balance and posture. It measures how she distributed her weight in both feet. wink

imip Tue 19-Aug-14 11:39:03

drewwife you've been enormously helpful to me in the past, which egged me on during our last visit at gosh - I got the ultrasound the same day because I just kept pestering saying, "it's only me who listens to my daughter every night sometimes crying in pain, and she is only 7".

The ultrasound now shows no direct evidence of inflammation, but synovitis, which I understand is the aftereffects of inflammation?

I'm at the point now where I don't actually care what she has got, but that they need to find what it is. Because I know the options open to us once a correct diagnosis is made. Now we have just moved back into no-mans-land.

I did think he was incorrect to say that if naproxen doesn't work, it can't be jia. I've had morphine before and it didn't work, well, not very much. Not all painkillers work...

Interesting about the wii fit. I'd been thinking of that as a more interesting motivation for exercise for her...

bunbaker I petrified she may need a canula. I'd say phobic is a good word to describe her. She's been shouting at the nurses that they were killing her during the blood test. Poor kids in the waiting room!

I just don't think I am being unreasonable that 8 months into this, nearly 9, we are no closer to an answer, and this inaction may lead another joint to be affected (if we are talking biomechanical).

DrewsWife Tue 19-Aug-14 16:15:50

Is it at all possible that your child hadj jia. And that it burnt out leaving the synovitis???

Jia can burn out unless your unlucky like my brat to have the genetic form.

Synovitis is common in rheumatoid arthritis.

Did you see rheumatology department??

I know my dd is settled at the moment. We don't like the term remission as for her it's always bubbling away but it's controlled by her medication. When she stops she flares.

Is it at all possible that if they are in remission that joints are left with synovitis showing the pathway of the arthritis and the joints will still feel the pain.

If you think about a time when you injured yourself that area throbs.

I'm not undervaluing your child's pain. But I do find with Katie that when she is settled her brain becomes active. Remembers the pain and causes it to ache and hurt.

She had to have psychiatric input for relaxation and pain management.

I was skeptical and offended (insert furious) but it made a big difference to her pain levels.

I'm a pm away if you need me and willing to chat via email or fb

My brat err I mean little darling is 18 now so we have been down the jia road for well over ten years. I'm expecting my next one.

I doubt this one will have jia but I at least know how to spot the signs and know how to access the help needed.

imip Tue 19-Aug-14 16:50:14

Yes, I do think that's a possibility, that the arthritis is dormant and the pain she is feeling is a consequence. And she may need intensive and painful physio to rectify it. When I ask about that, they just say they don't know! About 2 months ago, the pain went into the other ankle, so I'm not sure where that leaves the jia diagnosis. We are under the rheumatology clinic at both GoSH and our local hospital in London.

They say she needed to improve her coping mechanisms. I think it is kind of an unfair ask of a 7 yo without any guidance. She is being teased at school a lot, bless her. We're awaiting a counselling referral, and I am happy to progress that path, but nothing concrete is happening yet. It's like without a clear diagnosis, there an be no treatment... And time ticks on...

I, too, think she may not be at number 10 pain. But there is no doubt that it is constant (a penny for every time she said my ankle hurts, the mortgage would be paid off grin), and at times moves her to tears and impacts her day to day mobility...

Congrats on your pregnancy... grin. I have 4 dcs and always am happy for more - I'm a little jealous! Hope it's ok to pm you to bounce ideas about after seeing docs next (at this point nov, I guess I need to call to get something sooner?)

DrewsWife Tue 19-Aug-14 17:07:28

Never a problem to chat grin. My old blog which I am unable to get logged back into has lots of updates on dd and her jia. You would need to wade through lots of craft posts to find them. I think!!!

imip Thu 21-Aug-14 22:45:28

Thanks drewswife found it! I enjoy craft, so shall wade slowly grin

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