Child with 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.
ttrolz
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Joined: Thu Apr 19, 2007 12:50 pm
Location: Michigan

Child with RLS

Postby ttrolz » Thu Apr 19, 2007 1:23 pm

My son is 8 years old and suffers from RLS. He takes .5 mg of Catapres to get to sleep at night but now it is augementing already after only 3 months on the meds. My mother has RLS extremely bad and has recently had to switch from Requip to Mirapex due to augmentation. I have only a mild case of RLS and due to medication I take for chronic daily migraines, I choose to suffer through my RLS w/o medication.

My son on the other hand cannot go without the medication. We doctor in Grand Rapids, MI, and he is their youngest RLS patient. They feel that he is way too young for the Requip/Mirapex.

For the past four nights, he goes to sleep fine with the .5 mg of Catapres but then wakes up about 2 hours later with unbearable "angry legs". I give him another .5 mg of Catapres and some Motrin and a hot bath and eventually after many tears he'll get back to sleep.

He is tired and cranky all the time, obviously, because of the crappy sleep he's getting, and well, so am I!!!

I need some help from this forum..........RLS in Children, at least where I doctor, does not seem to be well researched. Does anyone know of a clinic/doctor that specializes in RLS in kids under 10? I am willing to go anywhere in the U.S. (and I'm not joking). Also, does anyone have any proven home remedies that has worked for their children? I would also be interested in hearing from anyone who has a child with RLS and what your nights/days are like, where you doctor, what they tell you, etc., etc.,............

Any help from anyone would be greatly appreciated!!!!
Parent of 8yom with RLS

sugbrendas
Posts: 234
Joined: Thu Aug 05, 2004 7:28 pm
Location: Balto.
Contact:

Postby sugbrendas » Thu Apr 19, 2007 11:02 pm

Oh i feel your pain. I just found out in the past few months how young children were being diagnosed now.
I pretty much know now i had it,taking off running in a deep sleep isn't normal.

Johns Hopkins here in Baltimore has a RLS board.Heres the link

http://www.neuro.jhmi.edu/rls/

I go to a branch of Hopkins,Bayview for my RLS.

Let us know if you get any info there.

requards,

Brenda
Finally able to sleep on average 9 hours a night!
Brenda

dellkr
Posts: 23
Joined: Wed Jan 31, 2007 1:10 am

Postby dellkr » Fri Apr 20, 2007 2:38 am

I'm so sorry to hear you and your son are having to contend with this. I was recently formally diagnosed with RLS, and have had this all my life, as do all three o my children, to varying degrees. THey have not yet been to the doctor for it, because I spent alot of time in and out of doctor's offices as a child, and tried to spare them that if I could serve as the guinea pig.

That said, several of the tactics we used for me as a child included teaching me to lie on my side in bed and rub the "bottom leg" back and forth from the knee joint slowly and rhythmically until the jumpy and painful feeling eventually began to dull.

Another trick was to pile on heavy blankets across my legs (grandma made the most WONDERFUL down-filled quilts!), then sleep with the window cracked to help with the heat issue...

While in the dentist's office (and I still do this one to this day), I request the xray cape to be laid across my legs...pressure helps a great deal.

Finally, my parents (and I now do this for myself) would massage the bottom of my feet beside the ball of the foot and under the base of the toes...accupressure point and that would help some.

Best of luck with this!

Kim

ViewsAskew
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Location: Chicago

Postby ViewsAskew » Fri Apr 20, 2007 3:01 am

I am not sure who the " best" child doctor for RLS is, but I seem to remember someone talking about this before. Have you checked out the "special populations" section? That's where most of the kids and RLS posts are. Seems that Lynne/Becat named a doctor in Georgia tht was good with kids and RLS, but my memory isn't all that great.

If you can't find any info here about docs specific to kids, there are many good docs for adults you could try. Dr Buchfurer in Southern California, Dr Rye at Emory, several of the docs at Johns Hopkins, Dr Becker in Dallas, and more. These are all knowledgable docs who participate in research and the RLS Foundation.

A call to the RLS Foundation could help, too. They would know what docs where focusing on kids.
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.

Rachel
Posts: 92
Joined: Thu Apr 12, 2007 12:42 am
Location: Massillon, Ohio

Postby Rachel » Sat Apr 21, 2007 2:38 pm

Ttrolz,

Weird question but there is a reason for my asking it: How is he doing in school?

Rachel

chelsea
Posts: 6
Joined: Mon Apr 17, 2006 10:36 pm

8year old w/rls

Postby chelsea » Mon Apr 23, 2007 4:06 am

Hi ttrolz

I also have a 6 year old with rls. Life is really difficult some days. Children who don't sleep are not fun. Our doc is in Edison NJ. Dr Arthur Walters at JFK medical hosp. He is a specialist in rls but only has a few children he treats. We have tried klonopin, requip, with no help. We are due to see him this coming week to try something new. I hope you get some help soon for your child. I would love to chat more...

Ellephant
Posts: 16
Joined: Wed Oct 02, 2013 1:23 pm

Re: Child with RLS

Postby Ellephant » Sat Oct 19, 2013 2:55 am

Is it possible to augment to that kind of medication, an alpha-2 adrenergic agonist?

ViewsAskew
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Location: Chicago

Re: Child with RLS

Postby ViewsAskew » Sun Oct 20, 2013 6:37 am

Ellephant wrote:Is it possible to augment to that kind of medication, an alpha-2 adrenergic agonist?


Not according to the medical literature. The only items that are shown to cause augmentation are dopaminergics (all forms do) and tramadol. I do not know the percentage associated with tramadol.

Several options that could have seemed like the OP's (original poster) child had augmentation - including progression, a secondary unidentified factor causing additional symptoms, the catapres never really resolved symptoms in the first place or the catepres was no longer effective. Since this was so many years ago, guess we'll never know! I do hope they found something to help.
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.

Maria
Posts: 43
Joined: Sat Jan 24, 2009 11:56 pm
Location: Eagle, Idaho

Re: Child with RLS

Postby Maria » Sat Feb 08, 2014 5:36 pm

To Ttrolz and all parents with children with WED --

There is a Youth Initiative sponsored by the WED Foundation http://rls.org/connect-with-others/youth-initiative. You'll find some helpful links there. There is is something else I hope you will consider:

When any of us is struggling, feeling helpless and discouraged, it actually can help to express that but can be quite a challenge for kids. Drawing can be a terrific outlet, and there is a contest going on. In addition to giving voice to how they feel and sharing that with others, children can earn a nice prize. Here's a link to the application: http://rls.org/file/contests/Childrens-Drawing-Contest-Entry-Form-6-30-2014.pdf

The deadline for this year is June 30, 2014. I can't wait to see what your kids will submit. Good Luck to them all!!

Polar Bear
Moderator
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Location: N. Ireland

Re: Child with RLS

Postby Polar Bear » Sat Feb 08, 2014 7:25 pm

Maria - thank you for this.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation


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