Helping toddlers

[Heffalumps in the night]

Hi Guys,
I haven't logged on in years (the site has changed a lot!). I have occasional rls (killed me in pregnancy), but I'm great most of the time. Recently realized that my 2 year old has RLS. I have her set up for an appointment with a pediatric neurologist at the end of September. I need tips on what to do to help her until then. She is clueless about what is happening to her; but I recognize the jumping legs and the whimpering when you want to sleep but your legs just won't stay still. If anyone has tips on relieving the symptoms for a young child, I would really appreciate hearing them. It's one thing to go through it yourself, but its hideous watching your child suffer. . .

[becat]

Hi Heff,
I love the name and welcome back.
There are a couple of things I'll tell you. I was one of those kids.
I can tell you that this is all just a guess. No one did much about RLS/growing pains when I was a kid. Thankfully, my youngest has a mild form.
Give her a few good bedtime routines. Like us adults, kiddos can do well by them too. Make some of these ideas things that you can travel with. A favorite pillow, maybe a small one that fits between her knees.
The same lotion, same smell Before bed.
Read her a book.
Whatever, she response to and helps. Make that the last 20-30 minutes before lights out. These little things might help her brain build a good memory of sleep. Sounds silly but it took me 40 yrs. to realize how helpful it can be.
A nice warm bath before bed.
Hot water bottles, not heating pads. The heating pad is never a good idea in bed.
Find a blanket that has the right weight for a pressure sensation for her. You might notice that she already does this with a certain blanket or toy. It's about the right weight. A certain amount of pressure. Really take clues from her about what feels good or not....clothing, bedding, and blankets.
When my son was little I got him use to foot massages. While he watched TV or when we read at night.........I'd massage his feet and legs.
If she is really waking up, not just in the groggy/half awake mode....let her move around. We want to hold and comfort, but it may be better to let her walk around. Just watch her when she's moving, just in case she's not fully awake.
I would have her blood ferritin levels checked. This is bloodwork and it means a few tears, but it's important information. Also, tell the doc right away that this is a genetic trait in your family.
Certainly take a look at the non-pharm section and reads some others ideas.
I'm so sorry. I know it is so hard with our kids. It's one the reasons I want to proactive about RLS and it's advances. It was pure *&^% for me every night as a kid. They are just now really thinking about RLS and children. Your in a tough position. My thoughts and prayers are with you.
Please let us know what happens. Unfortunately your not the only parent that has come looking for ideas. I'd love to know what the doc says about treatment options.
Best Wishes.

[Heffalumps in the night]

thanks. . .I keep getting logged off when I get on this board and it won't let me use my username, but I posted again under SamIAm earlier (I'll end up with multiple personalities)
I hadn't thought of trying a scent before, but I can see where that could help. So far she's not big on covers. I've learned to not put her in footed pajamas anymore (that would be hell, wouldn't it?) Everytime she goes to bed, she sneaks more stuffed animals up to her room so it's hard to keep her bed population stable. Warm baths we give her, but she doesn't exactly relax in them yet. She doesn't even stay seated. Its hard to help her when she doesn't understand what's going on.
I'll try your suggestions. I'd try walking on my hands if I thought it would help (it would definitely take her mind of her legs watching her mom fall on her posterior in the middle of the night!)

[trevb]

Hi heffalump...... are you the one who used to visit my room when i was little?

becat has given some excellent advice already!
But heres a very good document about children and rls that has LOADS of stuff. obviously dont take up any pharmacuetical treatment without consultng your dr!

http://www.rls.org/publications/documen ... LS2005.pdf

i had rls when i was a child and my mum used to put a heavy pillowcase full of blankets over my affected leg... the pressure of this helped alot for me to get me to sleep..... but these things are VERY individual so may not help for yours?? as becat says you need to go with your childs flow.

also remove anything at night thats not going to help her sleep... ie caffiene drinks, mad play just before she goes down, needs to be calm. Late-evening TV and video games sometimes can wake tired children up, so it's a good idea to have a cutoff time for these well before bedtime.


becats routine thing is one of the best things to follow. when a child gets ready for bed and has a good nighttime routine it kicks in all the 'sleep time' hormones in the brain in advance of her hitting her head on her pillow.

really important is to LET HER MOVE if she needs to, but you probably know this as you have rls too, so you know that you 'just have to' and having people tell you to stop just isnt fair when your young..

lots of luck in finding the best things for her.

trev

[jan3213]

Hi, I'm Jan

I had "ants in my pants" when I was a child--I'm 58 and couldn't lie still or sit still to save my soul! One of the things that seemed to work for me (that I remember) was when my mother, or especially my favorite Aunt Ruth, would "tickle" my back. She or my mother would lightly run their fingers over my bare back. That was so relaxing for me. It calmed my legs down and I would fall asleep.

It might be worth a try. Who knows?

As Becat said, you and your sweet baby girl will be in my thouhts and prayers.

Jan

[sardsy75]

Hi Heff

Well, Becat has pretty much covered it all in her post.

I too had RLS as a child ... and when I think back on it now I understand why they had me in such a "routine" for bedtime. It was the only way they could try and help me get my sleep.

When I was having bad nites though, my dad would sit and massage my legs, even though I was kicking and thrashing. The other thing that works for me is a "head tickle" ... try running your fingers gently through her hair and talking softly too her or singing her favourite nursery rhymes.

Trev is on the ball with that link too! Although I'm afraid I'm the opposite to him with the heavy blankets. It's mid-winter here and my legs went nuts on me in the middle of the nite last nite & i found myself shivering under one very light blanket as the rest were just wayyyyy to heavy for my legs to handle. I even tried hanging them over the edge of the bed, but that didn't work.

One of the main reasons I really hope to get to the November meeting is because one of the breakout sessions includes a review of a case study of rls in children. It's one hell of a nitemare that I had to live through so before I decide to pass it on ... I want to know more about how I can help my own children.

Best of luck to you and your daughter ... I pray that she finds a wonderful guide in you as you help her through this ... as you will find that she helps you.

Take care

((((hugs)))))

[Heffalumps in the night]

Everyone,
Thank you so much for all of the advice. I am waiting for a call back from her pediatrician (whom I love). I'm going to ask her about getting her ferritin level checked and see where that stands. I want to do what we can for her since we still have a month before her neurologist's appointment.
I have always been a big fan a nighttime routine. We have a bath, brush teeth, have a small drink of water, read a book, give hugs and kisses and off to bed (she and her older brother insist on going alone to their rooms). We have no caffeine in the house. No chocolate either. No tv here for that matter. We watch the occasional video.
I will try buying a lotion for her so she has a consistent scent at bedtime.
The pediatrician just called and said she thought checking her ferritin level was a good idea. She also gave me her address so I can e-mail her the above article about children and rls. She said that she will also research to make sure that there is nothing else that we should check in addition to the ferritin level so that Caroline will only need to get stuck once. I love our pediatrician!
When Caroline is having a rough night, I'll try rubbing her back or playing with her hair to see if that helps. I know I always love that myself!
I wonder how much of her daytime activity is typical and if any of it is restless legs. She doesn't talk about her legs even at night, so I don't know how to find out about the sensation she feels. She gets into these jumping spells during the day. But lots of toddlers do that. Those of you who had this as young children, did you have symptoms during the day and how did you handle them? I never know if I'm worrying too much or too little. She seems happy enough during the day, so I'm not stressing about it. I do wonder about it, though. She is very stoic. She doen't cry when getting shots. Had to get an iv once and they fished for 5 minutes in both wrists without results before giving up and she never even whimpered. It takes a lot to make her fuss from pain and discomfort. So, she may be have restless legs in the day and just not complaining. Or she just may be a very energetic 2 year old. I can't tell.
Pediatrician just called back. Going in tomorrow to have electrolytes and ferritin level checked. I'm not even worried how she'll handle that; she is such a brave girl when it comes to those things (unlike my husband! I'd have to drag him in kicking and screaming).
When I think of scents for bedtime, I think of maybe lavender and mint, are there other ones I should consider before I go shopping?
Again, I appreciate everybody's advice. I would trade her bad nights for my good ones in a heartbeat if I could. I'll do what I can for her.
Pooh's Heffulump Movie was her first video to watch in the middle of the night when suffering from a bad night with rls. That's how I choose my name.

[becat]

Hi Heff,
I loved reading Pooh to my son when he was a tot.....ok, I loved it for me too. maybe that's why I got a warm fuzzy reading your name. Good memories.
About the scents.....mint wakes up the mind, but lavender is calming. I think Johnson's makes a lavender scent lotion right now, maybe it's a baby wash?
I happen to like Moonlight Path from Bath and Body Works. But whatever you like. Lavender is the best choice.
I'm so glad you have a good odc for your kids. Seems like that is half the battle for most of us. Trusting her doc makes it easier to make choices, doesn't it? I know, I will go from doc to doc, but my kids always have seen our GP. alomst 18 yrs now. That's priceless!
Pain.....well I believe that most of us around here are pretty tough by nature. Let's face it if "normal" is being in pain or having to move to feel better, our brains already were strong enough to handle that for (most) many years before we sought help.
I know several of the others here and I have talked about pain torelance and we tend to have a strong one. my youngest does as well. Many of the people in my family do (mom's side, the strongest RLSers). Whats messed up is that we tend to wait too long, because we don't want to be wimpy. "I should be stronger" thoughts.
I know it's tough but a kid with tons of energy. My youngest, we'll call EMO, he never cried about shots, nor the spinal tap he had at 3-4 yrs. old. Never had to be held down if things were explained to him. But he did wake up every night for the first 7-8 yrs. I know now why. Yes, he was a hopper too! I always let him, knowing it was best to get that energy out. However, there are social rules and he had to learn that it he wasn't able to do that all the time. I taught him to bablance it, I hope. When we had to sit for a long time, a ton of plane trips and travel, church, I found a way to let him explode for a few minutes somewhere in private. I had no name for RLS then, just thought.......knew I understood. After a good hopping around or running, it would be time to be a gentlemen again. So I made him mentally busy. That's the key replace the phyiscal with the mental activity. Even for adults. I'm always doing something with my hands in meetings, trips, etc....
Sounds like your on the right path and certainly a good mommy. We're lucky to have you and so are your kiddos.
THank you for letting us know and please don't hesitate to share. We need all the info your willing to educate us with. We're with you on this one. Hang in there Mom.

[jan3213]

Hi, it's Jan again

Just had to say ONE more thing! You know, YOU may think YOU are learning from US. BUT, in all acutuality, WE are learning FROM YOU, TOO! I just re-read this whole thread, and some youg mother or father is going to learn a whole lot from you, Hemp. Thank you so much for coming here, and for being such a GOOD MOM to your Caroline! She's a lucky little girl!

Jan

[Guest]

Thank you, Jan and everyone else.
Don't you wish you could pick the stuff your child inheirited from you. Okay, she can have my love of books, but my husband's ability to sleep. . That way they never have to endure these awful things.
Okay, I won't waste any more time wishing for the impossible. I'll just be thankful that I have her and know that there are families who wish their problems were as unthreatening as Caro's. It's so easy for me to get wrapped up in my household, being a stay at home mom, that I sometimes need to step back and look at the bigger picture.
Nonetheless, I want to be the best mom I can be and do anything I can for her and so I appreciate so much all the advice every one has given me so far! I wouldn't have known to check ferritin levels if I hadn't come here. The research has improved so much since I logged on about 5 years ago!
I had my ferritin level checked once for a different reason and it was around ten (or less). I didn't realize at the time the possible link to rls.
I am very impressed with not only the info found here, but the generosity of spirit. The people here have more than rls in common; they have truly giving and caring personalities. I found coming here helpful five years ago and I am so happy to find it even more so now!

[Heffalumps in the night]

Caro had her first appointment with a pediatric neurologist today. He admitted to having not read up on rls in the last couple of years and said he wasn't aware of children having rls as young as two. He clarified that he didn't mean they couldn't; he just wasn't aware of it being documented, etc. Obviously it has to be documented and read by him to to count! Also, he was not sure what could be done with her as far as treating her since the drugs available are rather rough on one so young. He is also not convinced that she is not having seizures (I do have epilepsy). Even though I explained that her behavior, actions, movements are exactly like mine when I am having a night of rls; he is thinking they could still be seizures. I know doctors have to cover all angles and I should feel grateful for that. I should. I am trying to convince myself of that. He wants to do a sleep study and put on a couple extra electodes, he explained, to check for seizures.
I kind of got the feeling that he doesn't want it to be rls, b/c he doesn't know what to do with that. He's a epilepsy kind of guy; he wants it to be that b/c he is comfortable with treating that kind of problem.
We'll do the sleep study. But, Caro doesn't have rls every night. I don't know if the study will prove useful to him. We'll have to see how it goes.
I am thinking of calling our pediatrician who recommended him and having her email him the info that I sent her on rls and children (I get the impression he might feel more comfy getting info from another doctor rather than directly from me). Does anyone have any useful advice for this or the next stage?

[ViewsAskew]

How frustrating. You are right, though, that it's better he be thorough. In the end, at least you'll know exactly what it is. I am wishing and hoping that you find an easier way to get through all this.

I only have a couple of thoughts, and I'm not sure they are helpful at all!

- RLS isn't diagnosed by a sleep study because it happens when we are awake. They can diagnose only PLMD by a sleep study. So, the sleep study may rule out some things, but may not be definitive.

-Maybe you could videotape her on the nights it is happening and take him the video. That way at least he could see what is happening in case it doesn't happen the night of the scheduled study. My DH was at John Hopkins many years ago when he was being diagnosed with celiac disease. While there, they found that he had apnea. He didn't do anything about it. A few years later when he was so tired, he went to a local sleep study. Nothing. They sent him home and he spent another year being tired before I convinced him to record his snoring and stopping breathing. he did and took it to the doctor. That convinced them to do another sleep study - voila, apnea.

-See if the sleep center has any movement recorders called an Actiwatch that they could let you attach to her at home. These little doodads are like pedometers - they attach to the leg (or arm) and denote movement, like kicks. Dr Rye, one of the RLS researchers, has some of his patients use them instead of having sleep studies done. It it more convenient than going to a lab and you can put them on several nights in a row. You can buy them yourself, I think, for about $1000 each (ouch!).

Ann

[becat]

Hugs to (((Heff)))
How hard this must be on you. I know that when we take our kids to the doctor, it's cause we can't fix it ourselves. Your doing a great job so far, hang in there.
If all else fails try contacting this man/doctor.
Jeffrey S Durmer MD PhD
Director
Emory Children's Sleep Program
Emory University School of Medicine
Atlanta GA 30322
Neurology
Sleep Medicine
Pediatrics
I've been looking for the info I had on him, sorry as yet, I can not find it. But I believe that he was granted some research money for RLS studies.
I think your doing the right thing in getting this doc all the info you can. But the man above might be a good go-to for information for him. It does give him an option.
yes, I would think that many doctors would be a bit on edge about treating RLS in children. Like most people, my mom was told I'd grow out of my growing pains. LOL Heck, many docs feel the same way about RLS in adults. Your sweet Caro and you are making it easier for the next generation, just by asking questions now.
I'm so sorry about the seizures for both of you. How scary is that?
AS always my thoughts and prayers are with you both. My hope is that they will find an answer to the questions and even easier answers to treating her. Thanks for the updates.
Hugs to ya.

[Heffalumps in the night]

Thanks to you both for the great advice! I had not thought of videotaping her, but that would be an invaluable tool.
We do not live but a couple of hours or so from Emory (I myself graduated from Emory ), so I will definitely check Dr. Durmer out further as a potential option. I am glad I asked, b/c I had no idea such a program existed at Emory.
When I was a student there, I went to a neurologist at Emory, told him another doctor had suggested I had Restless Legs Syndrome. I actually used the name "Restless Leg Syndrome." He ignored me completely. I never went back to him again. I did not know the full horror until I saw my chart later when it was forwarded to my current neurologist: the Emory doctor had documented symptoms I did not list while never listing the term restless legs syndrome so that my complaint would all fit a type of seizure disorder!!! It was one of several examples of why I have a distrust of neurologists as a whole. Something about the type of personality of the neurologists that I have been exposed to that I don't care for. I am still waiting to meet that winning neurologist that will change my perception of the specialty. I am not holding my breath.

[ViewsAskew]

I have to mostly agree with you! I've never been a patient of a neuro that I was comfortable with. But, I sure did like two of the RLS researchers/neuros that I met at last year's RLS conference. Dr Rye seemed very down to earth. He also has RLS, though. I think the other doc I liked was Dr Earley, but I'm not sure. He also seemed very accessible and open. Both of them do treat patients in addition to doing research.

The difference is that I am not a patient of either of them! I might not feel the same way if I was.

I had one neuro that I thought really listened to me and was with me in terms of my treatment. But, after the third visit I realized she had a different agenda than I did. That seems to be it in a nutshell for me. All of the ones I've been to seem to have a very narrow view of treating RLS and if my way of experiencing RLS and the treatments didn't fit into that, they would try to make it. Sort of like trying to make symptoms fit into a seizure disorder that wasn't there!

Ann