Sunday, December 9, 2012

More swelling = new treatments

This past Thursday we found out that Monkey has more swelling in his right knee and ankle. Unfortunately both joints have already been treated via injection with the knee having just been done in October. He had been complaining of his foot/ankle hurting but I didn’t realize how bad it really was. Now, because of the continued inflammation in spite of the injections, we have to start talking more aggressive treatment.

I think deep down I knew this day might come but I hoped beyond hope that Monkey’s case would be different. That he’d be one of the lucky ones who had a weird flare but once treated with milder options he’d be ok. It might have been na├»ve of me to think that way but I think any parent has hopes like that. Now we have to face the reality of it all. His arthritis isn’t getting better and it’s time to talk about things that have scared me.

Our next step seems to be the drug Methotrexate. Metho-what? Yeah, that’s what I said when I first heard it. Methotrexate is classified as a disease-modifying antirheumatic drug (aka DMARD). Here are a few bits of info about DMARDs from the book Raising a Child With Arthritis:

- Do not provide immediate relief in pain or inflammation, but are believed to modify the natural course of the disease and prevent joint damage. (Because of this they are often used along with NSAIDS.)

- At least 2/3 of children with persistently active JIA require some type of DMARD.

- Side effects vary but all have the potential to suppress your child’s immune system to some degree.

And here are some bits specifically on Methotrexate from the same book:

- Has become increasingly common and provides a beneficial effect about 70% of the time.

- Taken weekly either by pill or injection. (Most children Monkey’s age are given an injection.)

- Side effects may include: decreased appetite, nausea, mouth sores, mild hair thinning, fatigue, lung irritation (cough), increased sun sensitivity and liver problems.

- Can deplete levels of folic acid which can increase the likelihood of these side effects. Supplementation is often recommended.

I will be completely honest here and tell you that when I heard our doctor say that we need to start Monkey on Methotrexate my heart sank. When I hung up the phone I broke down in tears. Why can’t there be an easier way to treat this? Why do we have to pump him full of meds every day and now this? My head knows that this is all necessary to make him better but my heart just breaks for him. It’s all just so much…especially for a three year old.

He’s had such a rough weekend. He’s clearly in a lot of pain and it’s starting to make him moody and inconsolable. It’s so sad when he comes up to me with tears in his eyes and says, “Momma, my leg hurts.” I try to hold back the tears as I scoop him up and love on him. I tell him that I wish I could make it better, that I wish I could take his pain away. You know what he said to me today? He said, “Momma, maybe new medicine help me feel better.” Mind you we haven’t even mentioned new meds to him because he wouldn’t understand. I can’t help but think this is God’s way of telling me that it’s all going to be ok. Yeah, it sucks that Monkey has to go through all of this but he’s so strong and maybe he’s right…my little hero.