Six year old daughter with RLS

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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Joined: Fri Feb 22, 2019 4:17 pm

Six year old daughter with RLS

Postby sfisher » Sat Feb 23, 2019 12:28 am

Hello. I am new to this board, but excited to have found it. My six year old daughter has RLS. There is a strong genetic tie to it, as my husband and several of his family members have it also. We have spoken to pediatricians, neurologists, and sleep disorder doctors without any real help. She is currently taking magnesium and iron supplements, and the RLS foundation has connected us with a doctor that treats young kids with RLS, so we will see how that goes. I was curious to see if anyone else's symptoms are worse during the day, as opposed to nighttime. My daughter has not had many issues with sleeping, and she has presented symptoms of RLS since a baby. However, during the day (at school too) her symptoms have gotten worse. Another thing we have noticed, is that her face will get splotchy and red when she is having an episode. I wanted to know if anyone else gets that. Any information would be greatly appreciated. Thank you

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Re: Six year old daughter with RLS

Postby stjohnh » Sat Feb 23, 2019 2:21 am

I have suffered tremendously from RLS, significant symptoms starting 10-15 years ago. It breaks my heart to hear of a 6 year old with this disease.

RLS is caused by Brain Iron Deficiency. In many cases BID responds (in adults) to intravenous iron but not to oral iron (unless blood shows iron deficiency as well). Most people with RLS have normal blood iron but low brain iron. The International Restless Legs Syndrome Study Group recently released consensus recommendations elevating IV Iron to first line therapy in adults. They said there was inadequate data to make a data based recommendation for children. However, they DID recommend that children with RLS be given consideration for IV iron therapy (unless a mitochondrial disorder was present). I suspect a pediatric RLS specialist may be very inclined to try IV Iron on most pediatric patients as it is the only effective treatment without significant side effects. Oral iron is not likely to be effective, but it may be. Also guidelines require a trial of oral iron before considering IV Iron.

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Re: Six year old daughter with RLS

Postby Polar Bear » Sat Feb 23, 2019 3:01 pm

Holland's post is very thorough.
I just want to say that I feel so much for your wee girl. And for yourself as you try so hard to help her.
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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