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Mayo Clinic

Posted: Tue Sep 18, 2012 3:59 pm
by ryrysmom

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 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!


Re: Mayo Clinic

Posted: Tue Sep 18, 2012 5:28 pm
by ViewsAskew
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.

Re: Mayo Clinic

Posted: Tue Sep 18, 2012 6:39 pm
by Polar Bear
Well done in being so proactive in your search for treatment for your son.

Re: Mayo Clinic

Posted: Wed Oct 17, 2012 6:21 pm
by Chipmunk
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!