file under: strange illnesses I never knew existed

18 May file under: strange illnesses I never knew existed

Let me start by saying B is fine. We had a tough week, but she is okay.

A little recap: She had been fighting a (seemingly) minor cold virus early in the week. Low fever that came and went and a runny nose. It seemed like no big deal, though we kept her home from school due to the fever.

By Wednesday she seemed much better – no fever and just a slight, clear runny nose. But then early Thursday morning I awoke to her screaming for me. I rushed into her room and she said “I can’t walk. My legs hurt.”

I thought maybe her legs were asleep or she was experiencing growing pains. I lifted her out of bed and set her up on her feet and she crumpled to a heap on the ground, crying in pain. She couldn’t walk or even stand.

Her fever was back too, though fairly low (100F). I called her pediatrician, who told us to go straight to the children’s hospital ER.

The nurses and resident we saw at first were puzzled. They hadn’t seen anything like this before. It was clear B couldn’t put any weight on her legs, but her temperature and vitals were close to normal. We were admitted for further tests. Her neurological screen was normal. Bloodwork showed low white cell counts (consistent with a virus) and high creatine phosphokinase (CPK) levels, which indicates muscle damage.

Several doctors consulted and told us that she had “benign acute childhood myositis” or viral myositis. It’s a rare complication in which a virus causes inflammation in the muscles. In B’s case, the cold virus that seemed minor had actually caused problems in her calf muscles.

Because her muscles were so inflamed and her blood protein was high, she had to have IV fluids to flush them out so that her kidneys didn’t suffer.

The doctors and nurses were amazing. B didn’t even feel the IV go in. She was in very little pain, and was able to watch Frozen and several other kids’ movies back-to-back, which she thought was a great treat. The toughest part was lifting her and carrying her around for five days…she isn’t a little toddler anymore!

I didn’t announce we were at the hospital, because I didn’t want to alarm our families until we knew exactly what was going on (the doctors had mentioned leukemia initially). But some of the fellow moms from B and Miles’ schools knew something was up and their response was wonderful. In a matter of hours, we had dinners being delivered to our house, friends checking in. B missed a week of school, she longed for her friends, but her teacher made a video of the class to cheer her up. Her closest friend at her new school stopped by with stickers and crafts for both B and Miles.

Sweet Miles…he caught the cold that kicked off this whole ordeal, but he didn’t suffer any complications. We’re trying to give him lots of extra love and attention, too.

Despite all this, last weekend was the best Mother’s Day I’ve ever had. Restful, quiet. We felt ensconced in our community here, able to relax and enjoy each other and cherish the relative good health of our children. Because spending even a small amount of time at a children’s hospital makes me keenly aware of how lucky we are, how these same symptoms B suffered could have indicated something much, much worse.

THANK YOU to everyone for your support and care!

The best part: Sunday morning, B was standing and helping Kris cook me an amazing breakfast in bed. She was still a little wobbly, but pretty much had regained mobility in her legs and insisted on playing outside.

As I write this, a full week later, she’s in the pool swimming, like nothing ever happened.

If you want to read more about benign acute myositis, there are some scientific papers here and here

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