our kids and RLS

RLS/WED 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.
LindaK
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Joined: Wed Mar 20, 2013 6:56 pm
Location: St. Louis, MO

our kids and RLS

Postby LindaK » Fri Mar 22, 2013 2:21 am

Our 3 year old daughter was recently diagnosed with RLS. She's been having trouble sleeping since she was 6 months old.

She has been taking an iron supplement since November. Her ferritin level was 17 in December, and up to 28 in February. The sleep clinic we have been working with said that they like to see ferritin levels above 50, 70, or even 90.

She seems so tired all of the time, yet she barely takes any naps anymore. During her nap time, she constantly talks and moves, even though she's tired. The only reason she falls asleep quickly at bedtime is because we give her Melatonin before she goes to bed. Without it, she did the same behavior at bedtime for an hour or more every night. She also wakes up overnight a few times a week, and when she does, she's usually up talking and moving for an hour or more.

She has recently started telling us sometimes that her feet hurt or that they're making noise. Despite being very verbal, she's never described any discomfort or pain that might be associated with RLS other than that.

We have a strong family history of RLS (always as adults), and we are concerned that our 1 year old daughter could also have it, because her ferritin level was 15 in February. She doesn't have as much trouble as her sister does falling asleep, but we don't know what's normal for her age. She is more trouble falling asleep lately, but we don't know if it's because of RLS, teething, transitioning to 1 nap, or something else.

We don't know anyone who has a child with RLS, especially one this young. It seems like there aren't many specialists who know much about it either, including our pediatrician and some sleep experts that we've seen. We are trying to find more information, support, resources, and/or additional treatments. So far, we are not seeing any improvement after 4 months on the iron supplement, so we're afraid it may not be helping her. We don't want to just keep waiting for the iron to help her, because she's suffering now every day, and it's negatively impacting her life at home and at preschool.

Thanks.

rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: our kids and RLS

Postby rthom » Fri Mar 22, 2013 3:48 am

Wow, linda. so sorry to hear about your daughter.
I had it as a child as well. From what i've been told it's awefull for the family too. I'm wondering, can she doze off if she is moving--like rocking, in a car, or on a swing? I was always drawn to these things as i could get a bit of sleep on them, very light sleep, but at least something.
I'm thinking a nice warm bath after a turkey (diner, sandwhich etc,), and some soothing movement--the swing etc. Does she accept gentle leg rubs? This could be added to help with the cramping in hopes that it takes the symptoms longer to kick in. Thus allowing her a bit longer sleep.
If you would like to ask me anything feel free. Even if you want to talk privately--just use the message part, I'd like to help in any way. :roll:

ViewsAskew
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Location: Chicago

Re: our kids and RLS

Postby ViewsAskew » Fri Mar 22, 2013 6:38 am

Tough spot to be in. Dr Picchieti, in Champaign, IL, is a sleep specialist in children's WED. I don't think he takes patients from other areas, but you could check with him to see if he can recommend someone for you. Dr Buchfuhrer, in southern California, does see children and will take patients from out of town. I believe his son, who I think had WED as a child, has also become a doctor...but I could be remembering incorrectly.

One of the WED Foundation board members has a daughter with severe WED. The daughter is in college now. I wonder if you emailed the Foundation that they'd forward a letter to her. You could ask how she, as a mom, got through it and if she has any hints for you. I just can't think of her name, darn it....http://www.rls.org/document.doc?id=2111 - see the Children's Initiative in the 2010 annual report.

Many of the parents who come her don't stay - they get help and they leave. I've often wished they'd check in again to see if they could help the next parent.

Massage, warm blankets, heavy blankets - these things might help. Don't know if surgical stockings are made for children of if they could be dangerous.
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.

badnights
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Location: Northwest Territories, Canada

Re: our kids and RLS

Postby badnights » Mon Apr 01, 2013 11:03 am

You might also want to check what the type of iron is, and if there might be another kind that would be better absorbed. If it hurts the guts, give it with a bit of food, but be aware that less will get absorbed then (so she might have to take more). *Be sure to give it with vitamin C, which is critical for absorption.*

Are you aware of the WED Foundation's pamphlet on pedaitric RLS/WED:
Children and RLS/WED It's not super-helpful as far as medication goes, because so little is known, but it is clear on the approach and attitude you must take in seeking help.
maybe also
Understanding Iron and RLS/WED
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice


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