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I really wanted to invite him to move in with us for 48 hours to see how he would react to a little girl who becomes withdrawn, reaches for Basil the bear and seeks comfort in cuddles when she is in pain - she doesn't have to say a word, we just know.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