new diagnosis child

WED/RLS occurs more frequently in certain populations, including people with end-stage renal disease, women during pregnancy, and people with iron deficiency. Also, RLS/WED in the elderly and children brings other challenges. Sharing your experiences may be extraordinarily helpful to others.
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Re: new diagnosis child

Postby pr39 » Sat Jan 21, 2012 2:18 pm

we could also make a library of case studies containing an in detail description of your or your child's WED. since this condition seems to differ greatly btw individuals, case studies are the only that could give some guidance. I still feel I don't know enough to do this for my daughter's WED.

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Re: new diagnosis child

Postby badnights » Sat Jan 21, 2012 9:21 pm

That's a good idea! You could start such a thing as a thread on this board, even.

Are you aware of the RLSF facebook page? A lot of people who don't use this discussion board go there, and I think I saw a parent on there once.... I only just remembered now, though. It's hard to find old conversations in facebook, so if you did connect with someone there, you might want to ask them if they want to join here as well, but a lot of people find fb more convenient. It's great for midnight rants! but not so great for looking up anything older than a few days.

You will need a fb account to post on the page but I think you can read it without one. ... l&filter=1
Beth - Wishing you a restful sleep tonight
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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Re: new diagnosis child

Postby Baffledsilly » Wed Mar 14, 2012 10:00 pm

Sorry to hear your 8yr old might have WED/RLS. I know as a child I didn't have much "crawling" sensation, but it was hard to sit still for long without my brain being "absorbed" by what I was doing at the moment. If it didn't interest me, it was useless to me. I used to run to school, run during recess, and most times ran home from school. Didn't know why for 35yrs, but once I was diagnosed everything made sense. When I did notice the "crawlies" I chalked it down to tired muscles from running so much. Your advantage here is you know what your child maybe have, and can determine her treatment from here. Don't just rely on Docs for information on meds and how to use them. As others have said, Pediatric WED/RLS is difficult because children can't describe their symptoms as well as adults, and even adults have hard time so I am not surprised this goes unnoticed.
Be patient and informed(interview the Neurologist as your talking to him/her and try to determine if they "believe" your daughter or not), and hopefully they come up with a course of medicine that works for her.

Take care,


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Re: new diagnosis child

Postby pr39 » Sun Jul 22, 2012 7:49 pm

A follow up: I am the original poster. It turned out that our child probably has PANDAS or PANS and that RLS is only one of her symptoms.
Apparently, PANDAS RLS connection is rare but not unheard of.
thanks to everyone who responded.

Polar Bear
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Re: new diagnosis child

Postby Polar Bear » Sun Jul 22, 2012 9:49 pm

I have never heard of PANDAS before and so googled it.

I wish your daughter and your family well.
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Re: new diagnosis child

Postby ViewsAskew » Mon Jul 23, 2012 12:33 am

Thanks for letting us know. It may help another parent who comes here someday. I hope you soon find a treatment/strategy that works well for her.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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