Mayo Clinic

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.
ryrysmom
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Joined: Tue Jul 31, 2012 3:39 pm

Mayo Clinic

Postby ryrysmom » Tue Sep 18, 2012 3:59 pm

Hi,

My 3 year old son was recently diagnosed with restless leg syndrome after a sleep study confirmed his leg movements. His ferritin was low at 26 and we tried iron therapy for 3 weeks...it didn't help. He has been on Neurotin for about a month. Some nights are better than others.

I sent his medical file over to the Mayo Clinic becuase I found a doctor there who is interested in pediatric restless leg syndrome. We were accepted and will be making the trip to Minnesota in 3 weeks.

I was wondering if anyone has been to the Mayo Clinic for RLS?

We are excited that there may be someone who can help/study my son so that we can get this under control at a young age!

Thanks!

ViewsAskew
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Location: Chicago

Re: Mayo Clinic

Postby ViewsAskew » Tue Sep 18, 2012 5:28 pm

We've had other members here go to Mayo in the past - but none that I know of were pediatric patients. The experience of the adults has been primarily positive. I seem to recall one person who wasn't so happy, but most have been.

What doctor are you seeing?

It must be very hard to deal with this in a child so young. It may take a few months for the iron therapy to work - so hang in there. It takes a long time to get the ferritin up to the 50 or 100 level.
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.

Polar Bear
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Location: N. Ireland

Re: Mayo Clinic

Postby Polar Bear » Tue Sep 18, 2012 6:39 pm

Well done in being so proactive in your search for treatment for your son.
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

Chipmunk
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Location: Madison, WI

Re: Mayo Clinic

Postby Chipmunk » Wed Oct 17, 2012 6:21 pm

It took me about six months to get my iron up to 50 from 20, so hang in there.

Have they talked to you about Celiac Disease or other gastro-intestinal disease that might prevent him from absorbing vitamins and minerals well?

Iron deficiency can also be caused by kids drinking too much milk. If kids drink milk constantly, any iron that is ingested binds with the calcium in the milk and passes through unabsorbed. It's not a common problem (you really have to drink a LOT of milk) but it's not uncommon, either.

Also, the iron supplements work best when taken with Vitamin C (ascorbic acid), so I would take mine with orange juice and a Vitamin C tablet.

You probably know all that, but I wanted to put it out there just in case. Best wishes for a productive Mayo Clinic visit!
Tracy

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


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