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new diagnosis child

Posted: Sat Jan 07, 2012 10:58 pm
by username changed
My 8 year old daughter has been diagnosed with RLS. We are still not sure if this diagnosis is the correct one. Could someone with more experience with pediatric RLS, please, take us through the basics? No one in the extended family seems to have RLS.
My daughter has an urge to stretch but not when she is concentrated and doing something she likes. When she is occupied, as when asleep, with an activity, she does not seem to be bothered by her legs. She explains the stretching by saying that her legs would otherwise get restless which is her word. She has no other physical symptoms, only some psychological like being overemotional at times.
Thanks in advance,

Re: new diagnosis child

Posted: Sun Jan 08, 2012 12:33 am
by ViewsAskew
Sounds like RLS to me. Poor dear....and you, too. So hard to watch her suffer especially when you can't know what she's going through or how to help her.

I've had it since I was a child, as have many of us here. It feels like you have a creepy, icky, not-so-nice feeling in your legs and you MUST move them to get rid of it. Since you don't have it, imagine that someone is tickling/poking you inside your skin or muscles, but only when you're relaxing or quiet. When you're busy, the tickles/pokes go away.

A hallmark of RLS is distractability - when you're busy, it's gone. When it gets worse that's not always true, but give me a crisis and no matter how bad my RLS is, I realize later that I hadn't been bothered by it as long as I was attending to the crisis.

Have her serum ferritin levels been tested? Is she anemic? Any other health issues?

Re: new diagnosis child

Posted: Sun Jan 08, 2012 3:12 pm
by username changed
Thanks for your reply. That is our next step to find her serum ferritin leves. No other health issues, fortunately.

Re: new diagnosis child

Posted: Sun Jan 08, 2012 10:15 pm
by ViewsAskew
Do you have a good doctor? Pediatric RLS is a toughie - not many doctors understand it.

Re: new diagnosis child

Posted: Mon Jan 09, 2012 11:34 pm
by username changed
We haven't seen a specialist yet -- have our first appointment with a neurologist at Children's Hospital in Boston in February.
If you have experience with pediatric RLS, can I ask a few questions?
First, our daughter has no feeling usually described as a part of RLS. She only has an urge to stretch them. The same feeling is in her hands now, as well. Her symptoms are now about a month old and have been progressively worse. They now come during the day as well and she needs to stretch pretty much the whole time.
At the same time, she is getting very emotional, crying for no apparent reason for a long time.
Does that sound as RLS?
Is there anything we can do about it?(Massage seems to have a limited effect. We are checking into serum feritin levels.) Are there techniques to help her go to sleep?
And, finally, what should we expect? Do the symptoms continue worsening?
Thanks again for your help.

Re: new diagnosis child

Posted: Tue Jan 10, 2012 1:27 am
by ViewsAskew
Pediatric RLS is tough because kids language skills are limited.

First and foremost, RLS is a movement disorder. There is a strong urge to move. That urge might not feel like anything (no sensation), it might feel icky, weird, annoying (a sensation), or painful (a sensation that hurts).

That she wants to move is probably what the doctor is keying on. That is occurs at rest is another component. Is it RLS? I don't know. It seems like it from here, but I'm not a doctor and I'm not inside her body.

Have you read this? It's a document put out by the RLS Foundation on RLS in Kids.

Here is a slide deck with info that may be hepful:

I'm not familiar with Children's in Boston. Johns Hopkins has some of the foremost adult researchers around. It might be worth called Johns Hopkins and seeing if they have a recommendations. Daniel Picchieti (maybe misspelling that) is an excellent ped RLS doctor in Illinois. He would take your phone call, I think (he's taken mine and I'm an adult!), and he might know of a good doctor for you to see. Another option is to write Dr Buchfuhrer at and ask him for a recommendation. He's in California but, like Dr Picchieti is/has been on the RLS medical advisory board and both know many other doctors.

Check out Jill Gunzel's site, the SHe also has a book. She provides many ways to cope with RLS that do not require medication. You might find ideas to help there.

Things that may help:
Some of us like heavy weights, like a blanket, on our limbs, others hate it. Try both.
Warm bath or hot tub - this helps many of us.
Puzzles or things that distract our brains into thinking
Avoid sugar - it's doesn't work for all of us, but some of us are bothered by it and cutting it out can help a lot
No caffeinated soda or chocolate

You've already tried massage - I hate it! but, this is what makes RLS so difficult...other people love massage. It makes me squirm just thinking about it. I also hate tight clothing, tights, pantyhose, leggings,tight jeans, etc., yet other people get relief from using pantyhose. I also hate dry skin. No idea why, but some of us have a sensory issue - if the skin feels dry or tight, it starts the RLS. So keeping it hydrated can keep the sensations away. Other people never mention it.

Per the crying....when RLS is active, at least in me, it has an associated emotional state. I am anxious, agitated, and upset. I hate how it feels, I hate having to move constantly, I just want it to stop. It's like an invasion of my body. I honestly don't remember how I felt as a child...but my family had it so I had role models and knew what was going on.

Could be this is her way of sharing her distress. Could be that it isn't RLS. But, I can cry now as an adult....and I'm not 8 and not able to understand and process it.

Not sure I helped any...hopefully some others will add their ideas, too.

Re: new diagnosis child

Posted: Thu Jan 12, 2012 7:08 am
by rthom
Wow that's really a hard one. I'm a parent as well and have hat it all my life.
Here's what I can add, I remember stretching constantly and not the relaxed kind of stretch like a yawn thing, but a long drawn-out uncomfortable twisting full bodied one. You've seen it i'm sure the kid that twists and stretchs at the same time looking like they'll fall out of their chair anytime. This i remember vividly especially bad during school--(rls/wed kids should be allowed to stand up when necessary--but that's another topic). I used to find things to do to "help the teacher" it saved my sanity i'm sure.

About the touch i'm mostly like viewaskew in alot of the things--my bedtime routine is very important--even whether or not the bed is beside a wall makes a difference, for me, anyway--I need to start prepping routinely but have the flexibility to deal with the crawlies, for me it means being sidetracked usually. (tv doesn't help alot-but i like to think it does) I use a mindless game for one, solitare or my pref. is lego--i fall asleep on the really hard nights with it in my bed.(who cares as long as i don't feel the rls so much)
As to the touch and massage, I hate being touched--slow torture for me, and makes me cross immediatly--always has even as an infant (parents told me), this includes massage. Here's the twist, if i put up with it (usually ony a few min is all i can take--trying to ignore it) and my wife does it nightly consistantly for a week or so the muscles loosen up and i'm much more comfortable. It's hard to notice though, mostly i notice cause i'm not stretching so much. My mom used to do it when i was young for a different thing (feet twisted out) so now i know that she was helping me without even knowing it. thanks mom.

I find the dietary things extremely important, caffeine especially.

I hate water always have but find that while i'm in the tub i can't hardly feel the rls but when i get out it seems far worse, maybe the water s too hot, feels to me like a buildup of sensation, (i don't know that that even exhists--so take it with a large grain of salt) but that being said i'm now reluctant to get out of the tub :( .

I to have an emotional response (i think from the frustration of the constant irritation in my legs), lots of anger,confusion and upset. (do i move to feel better or sit and behave)

The sensory thing--don't touch period for me. If anything touches me it bugs alot. clothing, people, beloved dogs, my blankets. I find personally that when i was younger a cool, light puffy comforter was the best if i was in my underw.. but now i find that fully clothed lightly so that i don't have to cover-up at all is all i can stand. I buy the breathable fabric--long sleeved shirts and sleep with that and pj bottoms and socks that don't move. Any added pressure to my arms or legs really bugs and keeps me up.

May i ask another question--not necessarily related to the rls--does she rock when expected to sit still or pick or like to spend alot of time swinging seemingly mindlessly?

Hope you get help and support and a no answer about you daughter! Good luck with it.

Re: new diagnosis child

Posted: Sat Jan 14, 2012 12:14 am
by username changed
Thank you very much for your replies. I did read most info available on line. they usually describe a general case that my daughter fits only to an extent. so your individual accounts are very helpful. We are learning what RLS is, how to help our daughter, and cope with it as parents.

Re: new diagnosis child

Posted: Sat Jan 14, 2012 12:16 am
by username changed
to answer the question about rocking: yes, she does rock. it does not seem possible for her to sit still. her concentration is, on the other hand, very good.

Re: new diagnosis child

Posted: Sat Jan 14, 2012 12:52 am
by rthom
Thanks for that tidbit.

Re: new diagnosis child

Posted: Sat Jan 14, 2012 1:22 am
by rthom
Just a note--i do believe that in my case intense rocking was a symptom of the rls--I spent alot of time in the corner on my knees because of it. I was not a willful kid so i would have given in to the punishments and stopped the behavior, (rocking) if i could have. I remember having to rock hard and fast (and faster and it also seemed to agrevate it, just wouldn't feel it till i stopped) because of something really bugging in my legs, like a shock feeling that wouldn't go away. Anyway i try to keep in mind that we as adults need to assess not only the behavior but the personality of the kids when trying to decide if it fits, as viewsaskew pointed out their communication skills are limited as are their own abilities to understand what is or is not happening in their bodies. So if the kid won't conform and they usually do, it's a flag to me... that sort of idea.

Re: new diagnosis child

Posted: Sat Jan 14, 2012 9:54 pm
by username changed
can you tell me what to expect on monthly basis? so far, our 8 year old had RLS for two months and her problems have been gradually worsening. She started with some problems during the evening and now has them all day. Her arms seem to be affected too. Can it get worse that this? when they say that RLS disappears for periods, after what amount of time is that? and for how long does it disappear? is this all individual?
thanks again for your help

Re: new diagnosis child

Posted: Sat Jan 14, 2012 10:23 pm
by ViewsAskew
It certainly can progress quickly in adults - not sure about children.

Free periods without is so variable. No rhyme or reason. I am making a guess based on the people who post here, but once it starts lasting hours each night and is in the arms, there usually aren't periods without it. Not always, of course, but I'd guess that is the norm. The people who have remissions without it either have secondary RLS/WED and they can control the main problem better so they have no WED, or they have relatively mild WED in the first place - rarely more than a few days a week, and never weeks at a time.

Have you written to Dr Buchfurher?

He's a recognized expert and 99% of the time will respond to people who email him with questions.

Re: new diagnosis child

Posted: Sun Jan 15, 2012 2:42 am
by rthom
Contacting Dr.B is a great idea, if you want ideas to ask him about, maybe consider talking to those who remember their childhood experiences with it, and if there are co-correlation between them and your daughter, it could be a jumping off point?

You sound like a great mom, i'm sure no matter what happens, with your dedication she'll having a good life. :clap:

Re: new diagnosis child

Posted: Sun Jan 15, 2012 12:41 pm
by username changed
Yes, I did send a message to It returned as undeliverable, unfortunately.
We know now my daughter's serum ferritin level which is 31. Some sites have that as a normal. Others have 50.