Restless Leg Syndrome Was Keeping Our Kindergartner From Sleeping Through The Night

by Rachel Garlinghouse
Originally Published: 
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“So, is he sleeping through the night yet?” my friend asked about my infant son. I laughed and told her that yes, he was. But we weren’t so lucky with his older sister, who was two-and-a-half at the time.

I figured she was just one of those kids who struggled to sleep at night, but when the problem persisted for three more long years, we saw a sleep specialist. I took a list of everything we had tried, including a strict bedtime, cutting out naps, lavender lotion back massage, a weighted blanket, and even having her adenoids removed.

We played calming music and tried different bulbs in her nightlight to no avail. Maybe her struggle was typical childhood growing pains? We would lay with her until she fell asleep, but she would wake 30 minutes or an hour later. We wondered if she was scared, so we moved her and her older sister into a bedroom together. That was a disaster since all they did was argue.

We tried having our daughter get extra activity before bed. I questioned if perhaps she had undiagnosed ADHD. Or maybe she was just doing what kids do at bedtime—procrastinating. We read extra bedtime books. We created reward systems with sticker charts and toy prizes, but it failed to work. She wasn’t consuming caffeine or getting screen time before bed, and she was otherwise healthy.

I questioned if my daughter’s lack of rest was simply her personality. She’s energetic and athletic. Just last year, she cut her eye on a slide when running away from a group of boys she was playing tag with at school.

No matter what we tried, or what I thought of, it wasn’t adding up. There was no clear-cut explanation as to why my child was six years old and still not sleeping at night. What was I missing?

The doctor ordered a sleep study. My husband and daughter spent the night in the sleep lab, my daughter hooked up to all sorts of wires all over her chest, arms, and scalp. A few thousand dollars and two days later, we got the results. To our dismay, nothing came up.

We were incredibly frustrated. At that point, we were getting ready to adopt a fourth child and had one question. How was it that babies who were just a few months old could sleep through the night, but my kindergartner couldn’t?

I began to question, was she really not able to sleep? Was she making a conscious decision to stay awake so she could get one-on-one time with us? Maybe she needed more attention. Of course, this spiraled into major mom guilt. We had adopted three children in a span of five years. It had to be my fault that my daughter felt it was necessary to create bedtime antics so we’d focus solely on her.

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Then one day I called my friend who is a nurse and mom of seven. I was at my wit’s end. My daughter was crawling in bed with us every single night with the same excuse. “I can’t sleep,” she would say, and then would proceed to tumble around like a cat with a ball of yarn in our bed. Not only was she exhausted, but we were too. For the first time in our parenting journey, we were co-sleeping, minus the sleep.

That’s when my friend asked me a question that changed everything. “Have you had her ferritin level checked?” I had no clue what she was talking about. She proceeded to explain that ferritin is often confused with iron, but they aren’t the same thing. Ferritin is a protein that stores iron in the body, releasing it when needed.

I was nervous that the test would be invasive and costly, but it turns out, a ferritin check is a simple lab draw. I called the sleep doctor who agreed to order the test. And a few days later the doctor called. My daughter’s ferritin level was extremely low.

The doctor rendered her diagnosis: “Your daughter has Restless Leg Syndrome.” I was shocked. I thought RLS was for those who were elderly or pregnant, not elementary-age children. The doctor went on to explain that RLS can be genetic. The low ferritin level explains why my daughter could literally not lay still at night and why all of our attempts to help her didn’t work. The doctor also told us that RLS is also a neck-down disease — restlessness isn’t always limited to the legs.

After receiving the diagnosis, I asked my daughter about her leg movements at night, and she told me they moved on their own. She couldn’t control what her body did. I also asked what the inside of her legs felt like, and she said it’s like ants under her skin. The “creepy crawly” feeling is a classic symptom of RLS.

We started our daughter on a prescription, ferrous sulfate — which is a type of iron. The doctor warned us that ferritin levels don’t rise overnight (pun intended). Instead, it can take months for a child’s ferritin level to reach an ideal number that manifests into the child getting a good night’s rest. And then there’s the challenge of keeping that number where it needs to be.

It took a good six months for our daughter to finally sleep through the night — once. Then she would sleep through every other night. Finally, she began sleeping through the night, every night, for weeks at a time. By this time, she was a first grader.

Now, every time my daughter hits a growth spurt, we observe her sleep becoming more disturbed. We have to be mindful of her development and symptoms, and her doctor would adjust her medication dose as needed. We were also given a prescription for melatonin to use on the evenings my daughter was having a particularly hard time falling asleep.

What I learned is that my motherly instincts were right. Something was off. Thankfully, RLS can be managed, but getting the diagnosis was the trickiest and longest part.

Now, of course, this is not intended to be medical advice nor am I encouraging you to self-diagnose, but if you’re at your wit’s end with sleep struggles (or you notice any of the other symptoms in your child), you may want to talk to your doctor about RSL. A simple blood test could give you some answers and your child some comfort.

Finally, we’re all getting some shut eye. And I got my bed back.

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