PLEASE TREAT YOUR KID’S ARTHRITIS (or other illness)

Should kids be taking medications like Humira, Enbrel, and methotrexate? If you think the answer is no, let’s look at the opposite side of that question. Should kids be facing permanent pain and damage to their body? Because that’s what happens if Humira, Enbrel, and methotrexate are taken off the table.

Childhood autoimmune diseases aren’t something to mess around with. There are a lot of reasons they may seem less serious. After all, kids can grow out of some of them. There can be periods of remission between flares, so it’s easy to think the next one will last forever. And from the outside, many kids with autoimmune diseases look fine.

This is wishful thinking and willful ignorance. You can’t go into medical decisions assuming the best will happen. You don’t treat a stroke by waiting and hoping it’s minor—you get medical treatment as soon as possible! I don’t personally know anyone who’s outgrown their childhood conditions, but I do know people permanently damaged by them.

The plain and simple truth is that childhood diseases like arthritis cause damage that stays with us for the rest of our lives. I come across way too many people my age (early 20s) who had care refused for them when they were younger and now have irreversible damage.

A friend of mine with Crohn’s disease had to get part of her intestine removed at 22. Her parents never wanted to make the jump to biologics, and they encouraged “natural” treatments. How well did that work? Your child now is missing part of her organs. Post-intestine removal, she’s finally on Humira.

I was talking with someone on Reddit who was worried their juvenile arthritis wasn’t in remission anymore. When I asked what medicines they’d been on as a child, they told me that their parents always refused methotrexate, even though the doctor recommended it. They revealed that they have permanent jaw damage. At 23 years old, they’ve already had jaw surgery to try to correct it. There’s not even active arthritis in their jaw—it’s permanently damaged from the past arthritis. This is what methotrexate is there to prevent!

Children have no say in their treatments. If parents want to make decisions that will damage them for the rest of their lives, they can. And they do! Stories like this are absolutely heartbreaking for me. I’m tired of seeing them, and I’m also extremely grateful my parents were proactive about my medical care.

Medicine has advanced so far in the past couple decades. Conditions like juvenile arthritis and Crohn’s disease used to inevitably lead to the outcomes my friend and acquaintance experienced, but that’s not the case anymore.

I know. These things are scary. There’s so much jargon and so many terms to learn. Some of the medications used are also used as cancer drugs. Many are injected or infused. Some have scary (but very very rare!) side effects.

But you want to know what else is scary? Having permanent, painful damage to your body for the rest of your life. Getting a joint replaced or organ removed in your early 20s. Having an increased risk of cancer due to all the inflammation that’s been uncontrolled in your body for years. And these things are much more likely to happen than any medication side effect.

Do you want to be the reason your child lives in physical pain and disability for the rest of their life? This can still happen with treatment, but if you choose no treatment, won’t you always wonder? I’m not saying everyone should always be on the strongest medications, but I am saying that you need to listen to your doctor.

It can be hard to make a decision about these things. It can feel intimidating and overwhelming. But not treating is also a decision, and you and your child will have to live with it for years to come. If you’re facing these decisions and unsure what to do, check out the Arthritis Foundation or a similar organization in your area. They should have resources and people to get in touch with to help you make educated decisions.

I don’t want to hear any more devastating stories of young adults with joint surgeries, small bowel resections, or permanent disfigurement in situations where a single choice might have stopped those outcomes.

Please, treat your child’s arthritis.

-Bri

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