Wednesday, April 25, 2012

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

Update: This post has over 9000 views - apparently lots of sleep deprived parents out there seeking answers. I hope this post helps. While I feel RLS was potentially part of our daughter's sleep problem - there were other issues too. If you are interested read this more recent post as well. And be comforted that though our journey to solve her sleep issues was longer than I'd like, she's been sleeping decently for well over a year now (though she's still a light sleeper) - have hope and keep searching for answers. And feel free to email me or comment below if you have questions.

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.)

33 little remarks:

Angie said...

Ohmygosh, I am beyond relieved for you guys (I've actually cared a lot about this and was dying to here the diagnosis). Gosh I hope it keeps working. Poor baby and poor mommy and daddy. And don't beat yourself up for those times you scolded her. Who hasn't gotten frustrated with their child to later find out they had an ear infection? You have been a wonderfully patient and positive mom. Kudos to you and here's to hoping it continues to work!

Ali said...

wowzas! What a bizarre story with such a happy ending. So interesting...sleep lots now little Momma- you've got a LOT of catching up to do it sounds like!! (as well as she, and let's hope she does just that!)

Jessie said...

Who would've thought, seriously!?! I'm so glad that you have a potential solution that is working! I hope it continues for you, and that you are ALL able to get more much needed rest.

Helena said...

I'm so GLAD. Knock on wood.

Tannie Datwyler said...

That's a crazy diagnosis!! But it sounds like the right one. I really hope it keeps working.

Meghan said...

How exciting that you are at least on the right track! I'm so glad you are getting some much needed rest! :)

Emily S said...

Wow, awesome! I mean, not awesome for her that she's had problems, or for you, but awesome that it has a solution. I really hope it keeps working, too!

And so glad you put the disclaimer, you know I've had questions about people popping their kids full of unknowns . . .

Holly Strong said...

This is the best news I have heard in a while!!! YAY Sleep doctor!!! I hope it keeps working and she turns into an all-time sweetheart. Since when I see her she is a sweetheart, but I don't get up with her at night. You are such an awesome Mom, Anna. You go girl!!! Evie is super lucky to have you as a Mom.

Kaela said...

Hooray for solutions!! Seriously- who would have ever thought! Hopefully all is going well in the sleep department still:)

Kaela said...

Hooray for solutions!! Seriously- who would have ever thought! Hopefully all is going well in the sleep department still:)

Alice Robinson said...

Just been googling around trying to work out my 11 month old girl's sleep problem... she has been kicking and kicking trying to get to sleep... no I've read you're blog I'm sure that's my girl's problem too. I remember as a little girl I had a horrible time getting to sleep, Id tell my parents it was a feeling like i need to wee, but i didn't need to wee, i just couldn't lie still. I know now I have inherited anemia from my dad. I'm so happy, really looking forward to getting my baby's iron checked! Thanks for blogging!

Money Family Musings said...

This sounds EXACTLY like my 10 month old! I'll be making an appointment with our doctor very soon. Thanks for sharing this.

Liz Adams said...

Interesting, my daughter was diagnosed with RLS just today and she's almost 2. We've had a beyond horrible time and the exact same problems. I haven't started the iron yet as I'm waiting to hear the amount but I found it fascinating that your story is identical.

Red Avenue Studios said...

Thank you so much for posting about this. We have been going through exaclty the same thing with my 19 mo old. I am so tired of people saying "let her cry it out". That does not work with a child that is going through this. We actually had a sleep study done and she moved her legs like 20 times in one hour, an extreme amount. And we just had her iron checked and it is very low. I am going today to get the supplements and I pray that they find relief for us all. Thank you for being open and sharing. I don't feel so alone ;)

Kellyg said...

My son is now 4Yrs old and my story is exactly the same. He's always been a terrible sleeper, and I have spent a lot of time crying by his cot, now bedside wondering what more I can do to help!
He never seemed to be able to rest as a baby in his cot and like you we did many nights sleep training,
listening to his crys, often crying myself, as it seemed so cruel, but we were soooo sleep deprived and had run out of ideas.
We had been to the GPs on many occasions only to be told it was part and parcel of having a young child.
My son also has a kidney condition and so regularly has bloods done. His irons were checked and they came back low and he started taking iron supplements.

Amazingly within a few days of taking this he started to sleep loads better.
He had a sleep study done in Feb this Yr and was diagnosed with RLS. He still wakes most nights( just once) but this is nothing compared to before!!
He still fidgets with his legs (mainly his feet!!) when sitting still at dinner time or watching tv and in bed.
He has just started school so it will be interesing to find our how he copes sitting still for longer periods of time?
He often can't resist kicking me when having a cuddle in my bed in the mornings or on the sofa, and says it feels nice to put his feet underneath me so he can't move them!!!
I feel very sad and angry that the Dr didn't take me more seriously, our life was so difficult looking back then and we were all so sleep deprived and worried about him.
I really do believe that a mothers intuition is very important and in future if I feel there's something not right I will not let them ignore me.
Good Luck to all you Wonderful Mothers,

Jenn @ A Glo-Worm Reads said...

Hi there! I just stumbled across this post and I'm thinking this might be our problem! My DD has been waking up a lot with sore legs that need to be rubbed for her to fall back asleep. She has never been a good sleeper and stopped napping at 1.5 years old. I don't think it's quite as bad as your daughters, but I'm going to start keeping track of her wakeups and see if it can be set aside as growing pains, or if we need to have a discussion with our doctor.

I myself do have RLS as well as my mom, so it is something that is in our family. Thanks for the post, I hadn't even thought of this until a friend mentioned it a few days ago. I didn't even think toddlers could get it.

I hope things are still going well for your daughter with the iron supplemnets, I'm going to see if I can get a blood test done for my daughter.

LAB said...

Thank you so much for your blog! I stumbled across it very late one night or very early one morning while searching for ways to comfort my 8 month old that was recently diagnosed with rls. We have started the iron but is there anything else that can be done to comfort him? I forwarded your blog to my husband and my mom because your story is so similar to ours. We are currently waiting for his sleep study results. Any additional tips would be very much appreciated!!

LAB said...

Thank you for your blog!! I forwarded this on to my husband and my mom because our story is so similar to yours. I found this very late one night trying to find ways to comfort our 8 month old that was recently diagnosed with rls. We are waiting on sleep study results and started the iron but is there anything else we can do when he wakes up so agitated? He's now not only crying when he wakes up but also kicking his legs out. Any tips would be very much appreciated!!

Justine Cotton said...

Thank you for all this information! I'm wondering if my 2 year old daughter may have the same issue. When my daughter was very tiny, she would lift both her legs and drop them repeatedly throughout the night when she was trying to get back to sleep. I was told that it was a self-soothing technique but wonder if anyone other little ones with the RLS diagnosis had done something similar?

Kimberly said...

I cried a little reading your story. My son is a mirror image of your daughter and just got diagnosed with rls and will be on the 30mg iron plus melatonin as well. He is 18 1/2 months. Please keep updating I'd love to know how its going. Itouchlivesdaily@gmail.com

April Johnston said...

This story hit so close to home for us too. My son will be two in March. He has always been a light sleeper, even as a tiny baby. In the last couple of months he has been a struggle to get to sleep at night and only stays asleep for an hour or two before he wakes screaming and crying and kicking his legs. We too Have been parents of sleep deprivation, with several hours in the night spent rocking or bouncing him back to sleep. So many family and friends tried to tell us to just let him cry it out. I knew it was more than just a behavioral thing......that was not going to work! Finally, our pediatrician decided to test his blood and sure enough he was low on iron. He has been put on a ferritin supplement. We have yet to see much improvement in the last couple of weeks but are hoping to see some changes very soon!

April Johnston said...

Thank you for sharing your story! We too have also been suffering from many restless nights with our almost 2-year-old. He has been difficult to get to sleep due to the symptom of RLS ( which I had kept describing to the doctor ) and then wakes several times through the night kicking his legs as he is crying. He recently had blood work done and we found out his iron is very low. We are now on a prescription of an iron supplement. Sleep does not seem to be improving much at this point but I'm hoping we will see changes very soon! It is so difficult as a parent to be so sleep deprived and continue to carry on a full-time job...... then to have those loved ones around you tell you he just needs to cry it out at night and it will all be fine. Prayers to all who may in our shoes!

Emily said...

I have been in tears trying to get my two year old to go to sleep. I was venting to some ladies about my struggle and I said how she keeps kicking her legs and how it bothers me and it bothers her cause I am saying "keep still and go to sleep" and now am wondering if the entire trials of sleepless nights stems to RLS! I am so upset that I assumed she was doing it deliberately to upset me and that she "wanted" to stay up but when I asked her tonight if she was tired she said yes and when I asked if she wanted to sleep she said yes. I seriously do not know what to do? Who do I even go to to get help for her?

Anna said...

Emily,

I hope you come back looking for an answer. I would take her to a pediatric sleep specialist in your area They can diagnose (and treat) the RLS if that is the case and if not, they'll help you diagnose and trouble shoot the problem. I'm so sorry to hear about your troubles, I know just how that is. Hope things get better soon.

Anna

sarah said...

Hi Anna!

I just found your blog and my daughter has the exact same thing going on right now! My problem is - the liquid iron drops taste terrible (my little girl is 2 so she won't be able to swallow a pill). Did you use any special tricks to get your little one to take the liquid or did you use something else? I was thinking of doing 2 flinstones vitamins but that would be 36 mg of iron and I really only need to give her 30 mg (although we are vegetarian so I'm sure the other 6 mg wouldn't hurt... But I am afraid of iron toxicity too)... Any thoughts??? I tried putting the iron in juice but it didn't help. I don't have the heart to force her to take the liquid either :-(.

Thanks!!

Sarah

Anna said...

Sarah - did you doctor prescribe the liquid iron? We didn't start it until after a blood test and my doctor prescribed the dose. They DO test terrible and we would bribe her with treats or hold her down and make her take it. Not fun. Once her levels got high enough we stopped and now I just give her one of the Flintstones with Iron multivitamins. You may want to check with your doctor on potential toxicity because it'd vary by weight. I hope this helps. It is not a fun issue. (Also, you can try pushing iron heavy veggies like beets/spinach via smoothies to see if that helps in a natural way as well)

Jill Tyburczy-Long said...

Hi Anna. First good thank you so much for posting this. My 19 month old son just got diagnosed with rls. We had a sleep study done and had his ferratin levels checked. I was just wondering what your daughter level was and what her weight was at the time. I only ask cause my sons sleep specialist put him on 60 mg of iron and now after reading this I'm scared that's too much. His level was 29 and he weighs 32 lbs. he's a big boy. Thanks for your help

Veronica Anaya said...

How do u know if your toddler has rls or is just a crazy sleeper? My daughter has a lot of these symptoms, the crazy kicking and the crying, I can't sleep at night Cuz she'll kick me and wake up crying every couple hours. But I've always blamed it on her being a crazy sleeper. Just recently tho my mom reminded me that she has rls and so do my 2 brothers. I don't want to sound paranoid like my husband says but if it's genetic it makes me wonder if maybe my daughter could have it. I'm really trying to keep an open mind on this and doing research on helping her sleep because she's getting worse as she gets older (and the kicks hurt more). Im just afraid of calling her doctor and sounding like a paranoid mom.

Anna said...

Jill - I'm sorry, I don't remember her levels, but I do remember thinking the dose sounded way too high and calling the doctor to double check. It was right, we did it and a follow up blood test a few months later confirmed her levels were back up. It was a very short term supplement process

Anna said...

Veronica - i don't think you sound paranoid at all. RLS has a strong genetic component, if you can swing a consult with a sleep specialist it might help you find some answers or help. In the meantime you can google RLS and try to find some tips to help, like rubbing her legs before bed. Good luck!

Heather Goodman-D'Anna said...

How long after the iron supplemtation and adenoidectomy did a better sleep pattern evovle?

Anna said...

@Heather - she started sleeping much better just a few weeks after adenoidectomy. Today she is still a relatively light sleeper, but is much more rested than she used to be. I wish I could say "she sleeps 12 hours a night every night!" but she doesn't. But that's really part her personality. My good friend's daughter had the same surgery at 18 months and now sleeps perfectly.

ola tolu said...

I am from Nigeria, been worried these days when my 22 months old wakes up incessantly in the middle of the night, crying and kicking. It has not been easy for me and his dad cos we co-sleep with him. Then, an idea struck me that it could be his legs since he kicks with them a lot, I have RLS but wasn't so sure children have it, I googled it and came up with ur blog. Thanks for the info, will have to go do his blood test. But for now, anytime he wakes, I just help him massage his feet and off he goes to sleep. Kudos to mothers...

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