Restless Leg Syndrome aka Why My Baby/Toddler Struggled to Sleep {A Diagnosis}

It's hard to blog about this because I worry we'll have a few good days and then another setback.

That's how things have gone with Evie. We get our hopes up that she (and we) were finally going to get some rest and then whatever we tried would stop working. We'd look for marginal tiny improvements and say "I think that maybe it is helping..." but we'd never really know.

Background:
When Everly was born she was colicky. She had a tough time. With sleep, with life, you know, all of it. They said she'd outgrow it around 3 months.

I think she outgrew it at 4 months.

And then we started sleep training. I read a lot of different things and we tried a lot of them. The one that helped the most I blogged about way back here.

But though we had marginal improvements, she still slept terribly. She'd often cry and cry going down and then wake up over and over again at night. People would tell me "crying it out is so hard, but after a long 3 days my baby got the hang of it". We'd try letting her cry it out for days and days (weeks, months)....she did not get the hang of it. No matter how consistent, no matter the method, it was not working.

But she also wouldn't co-sleep with us. Couldn't relax I guess. Couldn't fall asleep, it was too stimulating.

There was a time when we could rock her all the way to sleep. Well sometimes rock sometimes go would gallop/hop/skip/whatever around the apartment and she'd fall asleep eventually. But she outgrew that.

So we were out of options and listened to lots of crying. Sometimes one of us would have to leave the house and go for a drive. There was lots of frustration and anger and crying (by both parents and baby).

I saw the pediatrician at 15 months. Just to talk about sleep, nothing else. He researched articles, he told me we'd already done everything behaviorally, and he gave a few minor ideas for tweaks, a prescription to try, and said we could also try Benadryl to help her out.

I was grateful for the pediatrician's advice, but it didn't help really. Well sometimes I think benadryl did, but I hated giving it to her. And if it helped it was marginal not drastic.

So finally we sought a sleep specialist's help.

The Diagnosis:
I thought, "what can this woman do? Evie's too young for a sleep study -- ain't no way this baby was sleeping in a strange place with cords attached all over -- and we'd already tried everything I could read about behaviorally. And both my pediatrician and I had done research online and found very little to guide us.

But it was a last ditch effort, worth a shot I guess. And since she's the only one in Utah it took weeks to get in to see her. In the meantime we filled out a lengthy questionnaire and tracked her sleep for about 2 weeks (it was a messy and not consistent chart, I'll tell you that).

Then we went on April 18th. Evie colored (and ran around) and the doctor and I talked. A lot.

Dr. Pfeffer listened and listened and listened and did not rush to diagnose. She gave credit for what we'd done (and seemed impressed by the lengths we'd gone to, actually) and then finally she gave me an idea of what she thought it was:

"I think she might have restless leg syndrome".
What?! I'd had insomnia for a brief time back in college and my doctor brought this up but it was ruled out. So I wasn't totally unfamiliar, but I would never have thought of it for a toddler -- none of my Baby Center emails, sleep books, or journal articles mentioned this as a possibility.

Anyway, apparently people with RLS are fine during the day. But when they go to relax at night and their muscles loosen up their legs start to bother them. I've seen it described as burning, tingly, bothersome, like bugs crawling all over. Horribly unpleasant and only goes away when they move their legs. So people with RLS have trouble sleeping because they are so bothered and have to move their legs.

The doctor suspected this is why Evie can't relax and lay down to co-sleep.

And it's why she moves all over her crib at night.

And why she has a really hard time going down and the majority (but not all) of her wake-ups happen in that first half of the night, so trouble with sleep onset primarily. But also that she's a light sleeper.

The problem is RLS is diagnosed generally in older kids and adults who complain about pain or irritation in their legs. But my 2 year old doesn't even say "mama" on demand or ask for a drink with more than a grunt and pointing so there was no way for her to describe it. So how to know for sure?

The doctor said people with RLS often have low iron. Thus we were sent for a blood test (as seen in the last post) to confirm her suspicions. I drove straight from her office to the lab to get that blood drawn.

The results came back the next day and they were low, both measurements. Quite low.

So we started giving Evie 30mg a day of iron (a LOT for a little kid). And a dose of melatonin at bedtime. (And we're also trying to amp up iron in her regular food as well).

And wouldn't you know, she's sleeping like a charm, pretty much. Not perfect yet, but a dramatic and unbelievable improvement. She's slept more long stretches in the past few days than I can ever remember in her life.

It is somewhat of a miracle.

It's too soon to know for sure if this is "IT" but it seems like we're on the right track.

And I'm so relieved that there's an answer. That my baby girl is finally getting some sleep. And that the answer (at least so far) has not required prescription drugs--just 2 supplements available at a health food store.

I'm just sad we couldn't have figured this out somehow sooner. Poor Evie. We'd come in and scold her and say "Evie it is time for bed, go to sleep, it is not time to get up and play or leave your room" and she just wanted to tell us her legs hurt. But she didn't know how. So she just cried.

We were all helpless. It breaks my heart really.

But mostly I'm happy happy happy that now we seem to have a solution.

And I'm crossing my fingers (and praying) that the improvement lasts.

(*As a disclaimer I want to say that both melatonin and iron supplements can be dangerous if given to a child who doesn't need them or if given in too high of dosages. So if you suspect this could be a problem for your child you should speak to a doctor before dosing up. Over-the-counter/natural does not mean "safe" in any form or strength (and supplements are not regulated by the FDA so you want to be careful about where you buy such things too, Walmart is not a good choice, btw.) Be careful with your babies and seek advice before experimenting with these things.)