going deeper with juvenile arthritis

i haven’t written too much in the last few years about layla’s arthritis. she was officially diagnosed with JIA (Juvenile Idiopathic Arthritis, or just JA) about 3 years ago, in May of 2014. She was 8. That diagnosis was almost 3 years in coming, with a lot of confusion, frustration, and various other issues and treatments in the meantime. She had just turned 6 when she had her first flare (that we know of), although we didn’t catch it for what it was at the time. I blogged plenty about that process, but around the time she was diagnosed, is when my blogging updates kind of fell off. somehow i never made a “label” for arthritis, so most of those updates will fall under the label “doctors”. my plan is to go back and retroactively label anything having to do with this, even before we knew what it was, with the JIA and arthritis labels, so the back story of all of this is easier to find, and not mixed in with posts about colds or ear infections, and goodness knows there were plenty of those back in the day!

at any rate, layla has arthritis. this is different than osteoarthritis, which is generally associated with overuse, injuries, or advanced age. juvenile arthritis, is more like rheumatoid arthritis, but not exactly. it’s an auto-immune disorder, which means various things. 1) we don’t know what causes it. 2) there is no cure. 3) it doesn’t go away – she will have this her whole life, unless something happens about number 2. 4) it is the result of the immune system mistakenly attacking the joints causing inflammation, pain, and damage to the joint. 5) the symptoms (known as flares) come and go at random. she will go months with no flares at all, and then wake up in the middle of the night with something swollen and hurting. sometimes it will hurt for a week, sometimes, only a few hours. 6) having a diagnosis of an auto-immune disease in the family, means other family members are also at risk of auto-immune disease. they tend to be genetic, although not always the same one. 7) having a diagnosis of one auto-immune disease puts one at a higher risk of being diagnosed with another. 

there are more, but that’s where i’ll stop with that. i’m still just learning what all of this means.

for the last 3 years, there hasn’t been much going on with layla’s arthritis. until recently, the only joints affected were her ankles. off and on, she has taken an anti-inflammatory (naproxen), but mostly she hasn’t needed it. she had one steroid injection in her left ankle in the summer of 2014, and that worked well. she’s had one significant ankle flare, that i can recall, since then, and i’m not even sure which ankle it was. in general, she’s had a pretty easy time of it, considering.

and i was pretty comfortable, as her parent, not worrying too much about it. i have friends, whose kids have it much worse… more joints, more flares, more medications… maybe i was smug, maybe i was delusional… i know for sure, i was thankful. nobody wants to see their kid in pain. nobody wants to make decisions about medications that will prevent damage, but have unpleasant side effects. nobody wants to see a kid be limited by something outside of their control. nobody wants to have a doctor tell their kid they shouldn’t do something they love to do because it is too hard on their body. nobody wants to worry that their other children are being overlooked in all the drama over their sibling’s medical needs. nobody wants to look into the future and wonder if their kid will be in pain or debilitated as an adult because of the progressive nature of this condition. it seemed like layla’s arthritis was mild, wasn’t going to give her more than occasional trouble, was isolated to her ankles, and responded well to the injections. nothing to worry about! easy peasy. no nasty, immune-suppressing drugs, no worries about having to quit gymnastics, no frequent visits to the rheumatologist. we were lucky.

and then this year hit. although it had been well over a year since she’d had an ankle flare, last november, she woke up one night at 1:30am in tears with the back of her right hand all red and swelled up.

and then a couple months ago, she started complaining about her neck hurting at gymnastics. and then in february, she started complaining about her jaw hurting. a lot. one day, i got a call from the health room at her school that she was in there, and almost in tears because her jaw was hurting so much. i hoped it might just be from the 12 year molars that were actively coming in at that point, so we made an appointment to see the dentist that afternoon.

but the pain was only on one side, and her mobility was limited in the TMJ, she was holding her mouth slightly off-center. our dentist referred us to a dental specialist, who we saw, but i also put a call in to the rheumatology nurse line at children’s. that’s the thing with arthritis… you never really know. if her ankle hurts, did she twist it? or is it arthritis? if a new joint is hurting, is it an injury? or is it arthritis?

her rheumatologist was very concerned. at every appointment they take measurements of various aspects of mobility. the fact that the pain in her jaw was limited to one side paired with the amount she was able to open her mouth being less than the last time he saw her, made him quite certain we were dealing with some pretty significant arthritis in the TMJ. he’d made note of it when he’d seen her previously, but the fact that she had no pain there, left it just at that – something to take note of… he ordered an MRI and also xrays of her neck, to make sure there was no injury there. in the absence of evidence of injury, the assumption is that the pain and limited mobility in her neck is also likely due to arthritis. he prepared us for the fact that we would likely need to up our game in the treatment department, and he was talking about some of those drugs that i’d been desperately hoping to avoid.

at this point, i felt like the bottom fell out of my delusion. i felt like i should have felt when we got her diagnosis 3 years ago. but at that point, it almost felt like a relief to FINALLY know what was going on with my kid. and then, after the initial onslaught of information, things settled down, and it really didn’t seem like it was going to be that big of a deal.  and now, maybe it is a big deal. and i have to wrap my head around everything i had thus far avoided.

so, on monday, we went in for her MRI. she was totally dreading it, because they have to put in an IV for the contrast. last time she had one, the nurse missed her vein the first time. she was also younger, and she remembers it as being traumatic. this nurse was awesome, she used to be a gymnast, and she used this amazing numbing medication and layla didn’t feel a thing. the MRI itself wasn’t a big deal… just a little loud and boring, but she got to watch a harry potter movie, so she was all good in that department. we celebrated afterward with a super syrupy starbucks frappuccino. (and coffee for me.)

 

we met with the rheumatologist afterward to go over the results.

yes, the MRI showed significant inflammation in the left TMJ, as well as some erosion in that joint. the TMJ is apparently a joint that you don’t want to mess around with. it also does not react as well (as the ankle or other joints) to the steroid injections, so that’s not really a complete treatment option. damage can happen faster there, as well as causing issues with growth. the affected side can stop growing, while the unaffected side continues to grow as normal. all reasons to not ignore this! also, the x-rays of her neck showed no evidence of injury. and we had to report a third flare in the back of her right hand. all of that confirmed that we do, in fact, need to up the treatment game.

and so we stay with the naproxen for now, but we are adding methotrexate, a drug that will hopefully get these things under control and prevent further damage, as well as eliminate pain, inflammation, and increase mobility in the affected joints. all good things, right? definitely. but it has also been known to cause stomach pain or nausea, it works by suppressing the immune system, leaving you more vulnerable to infection, and it works best when given by injection. and so… right then and there, i learned how to administer medication by injection! i gave a nurse a shot of saline in the back of her arm. it was a little traumatic… for me. she, apparently, does this all the time (bless her!) to help parents learn how to do this. i only had one minor fail, in that i sort of had to poke her twice. when you give the shot, you pinch the skin a little to give yourself a good chunk to poke, and then you release it so you have both hands available to hold the syringe still and depress it at the same time. when i released her skin, i didn’t account for the fact that it would lower, and it lowered right off of the end of the needle. oops. lesson learned, and now i (hopefully) know how not to do that to my kid! we haven’t started this yet, as it’s good to give it on a weekend, in case there are any adverse affects (like the aforementioned stomach pain). she will also be taking folic acid, which helps with those side effects.

i HATE everything about this.

we will also be adding another med – enbrel – which you may have seen commercials for. it’s a biologic medication, frequently used to treat rheumatic conditions like RA and psoriasis. this is another med given by injection, and it also suppresses the immune system. but it might take a while before this gets added. some insurance companies can be cranky about covering this and it’s very expensive. apparently there are some hoops that the dr. has to jump through on his end before the insurance company will approve it.

so, how is layla dealing with all of this?

hard to say. probably a little better than i am, although she’s not happy about having to get shots weekly, and she (rightfully) doesn’t understand why all of this had to happen to her. she, like everyone else, wishes it would just go away and she could be a normal kid and not have to worry about any of this.

i, of course, in addition to imagining the worst-case scenarios for all of this, am worried that suppressing her immune system will mean catching the stomach flu every other week… because it always comes down to vomit for me.

so that’s where we are at this point. i will try to keep this updated going forward. pray for us. none of this is easy, and i pretty much hate it all. i know there is a plan that is bigger than me, bigger than layla, and i know good can come from all of this. we just have to trust that God will use this for good, as he has promised.