What's left to try? Anyone??

worriedmum

Hi All,
I hope this post finds you and your small people well.
I am writing this in the hope that someone can empathise, offer ideas, or actually, just be prepared to listen to my ranting, cause quite honestly, I have no-where else to go with it, so thank you in advance to anyone who reads this.
Background: Freya, my daughter, 8 this month. Diagnosed Oliogarticular (now extended) JIA aged 2, and uveitis aged 4.
Meds: MTX s/c 10mg weekly. Humira s/c fortnightly. Folic acid, Pred forte eye drops, plus Naproxen and paracetamol for pain.
Numerous joint injections to various joints over the years, usually with good, long effect. Always involves the left ankle which has been persistently painful for the past 2 years. Pain has changed from typical morning stiffness with swelling and heat to nothing visible, 'clinically normal' looking ankle which gets very painful after exertion then rest. Example, walking to school (3 minute walk) sitting down for carpet time/assembly, then getting up to walk back to class. so minimal exertion.
Reported this numerous times at clinic, 'nothing to see clinically' so not to worry. I asked them to do an ultrasound again, it was essentially normal with only small amount of synovial fluid and no thickening seen. Pain persisted, so last summer I asked if we could try an alternative imaging modality, which led to an MRI scan.
So, whole new chapter - the MRI showed some deep inflammation and more importantly some osteonecrosis (dead bone from poor blood supply) around the ankle joint. They injected it and for three weeks, the pain eased... but yes, just 3 weeks.
So, clinic about a month ago, rheumatologist told me we were making too much of the pain and would perpetuate a problem if too reactive and should stop (or wean off) the pain relief. I know what he is saying, don't make too much of it and she won't worry about it and I am familiar with the research to this effect but seriously, seeing her in pain every day is so hard. He tells us we should be able to get over the pain by doing the physio exercise and hydro exercises to strengthen the muscles to support the joints - again, I know the science makes sense and I don't disagree but I really wanted to invite him to move in with us for 48 hours to see how he would react to a little girl who becomes withdrawn, reaches for Basil the bear and seeks comfort in cuddles when she is in pain - she doesn't have to say a word, we just know. She is too scared to do her physio because she knows she will be in pain afterwards so have to give her adequate pain relief to enable her to do them.
So, this week, they put her in plaster at physio and orthotics to see if locking the ankle joint into dorsiflexion would give the joint a rest from moving and take the pain down. They already made her some orthotic soles for her school shoes which have helped a bit so I had high hopes for this trial and error technique. Disappointingly it doesn't seem to have helped, which makes me feel really low because I just want something to work for her. They were planning on making her a splint if it helped but not sure now that there is much point.
So, we are awaiting a further ultrasound and MRI to see if new inflammation has crept back in but quite honestly I feel as though the pain is mechanical from the osteonecrosis which they think is a result of repeated inflammation and steroids injected into the joint.
So where do we go now? Anything left to try?
Sorry this has been so long, sorry if I am moaning, I just want my little girl to have a pain free future and right now, I am struggling to see a solution.
Thanks for listening
best wishes
Sam. x

stickywicket

Hi Sam.

First things first (((()))). You sound as if you need some and, frankly, they may be of more help to you than anything I can write. Poor Freya! Poor you! It's horrible seeing ones child in pain. I think it's the sheer impotence that's so draining.

What I'm going to say is based only on my experiences as an adult with arthritis. (I was diagnosed at 15.) Things might be different for children. So I'll jump right in and say I don't see your hopes for 'a painfree future' for Freya as being realistic though I guess we all want that for our children. I've certainly not had a painfree life yet I consider I've had a very good one. (I've just booked to go to Los Angeles again to see my elder son and grandson.) All in all, I think it's the painful experiences that we learn from. Learning to cope with pain is a massively useful lesson.

I think most people find that, the more steroid injections they have, the less they work. And, although steroids are a fantastically useful resource, they're not, usually a long term solution as they can bring their own problems as you, unfortunately, seem to have found.

Many of us adults with auto-immune forms of arthritis have realised that there can often seem to be no connection between disease activity and pain experienced. The meds do suppress the disease well but we continue to suffer with damage done. That becomes a fact of our lives and, gradually, we learn to accept it. The normal reaction to pain is to fear it because it's a sign that something is wrong. With arthritis we know that something is wrong but that something can't be eradicated. We can let it determine our lives or we can learn to live with it and attempt to use it as a spur to achieve things. (I think I found childbirth very easy compared with my non-arthritic friends )

Have you tried talking to our Helpline people? I'm told they're very kind and sympathetic and will listen as long as you need them to. I think being 'isolated' with a problem makes it so much harder to deal with.

For what it's worth, it sounds to me as if Freya's rheumatology team are being thorough and doing their best. I guess your, unenviable, task is helping her to keep putting one painful step after another, learn to ignore the pain, distract herself from it and get on with things. It will be very tough for both of you. But very worthwhile.

Boomer13

I am sorry to read your story, that is really awful for you and your little one. Sending you hugs as I don't have anything else to offer.

Best wishes and (())s for your little girl too.
Anna

worriedmum

Thank you both for your good wishes and support. (especially the hugs)
Ultrasound showed no new inflammation yesterday, which is important and perhaps reassures me that her pain is poorly mechanical, her meds are keeping her inflammation at bay and that our plan for further physio /orthotic support is on the right track. Splint being made, which I hope will help to alleviate some of her pain. Back to clinic next month, also to check Uveitis staying quiet and hopefully, come off the eye drop's!

Hope you are well and thank you again for responding.

best wishes
Sam. x

stickywicket

Thanks for the update. It does sound as if things are on a fairly even keel for Freya right now. I do hope the splints and physio will help a lot. Good luck with the clinic next month