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kaseykalb
@kaseykalb

Posts: 1
Joined: Sep 04, 2018

Kleine-Levin Syndrome

Posted by @kaseykalb, Tue, Sep 4 5:15pm

My 16 year old son was recently diagnosed with Kleine-Levin Syndrome (KLS). This has been an on going battle for over 3 years now. I also have a daughter that was diagnosed with narcolepsy at around age 16-17, but had symptoms years prior to being diagnosed. I was originally told that there was no possible way that I could have one child with narcolepsy and one with KLS. IF I did, my family would need to be part of a study. Both children had issues with being sick a lot as younger kids. Both pregnancies were healthy pregnancies. I did have strep throat with my son, and I did have the flu with the other. My son had RSV at 10 weeks old. He was a very normal, active little boy. He was in and out of hospital with croup and pneumonia, which finally faded, but that is when the sleep issues started. This year he got an upper resp. cold and broke out in a rash, Guttate psoriases, which cleared with Azithromycin. Any one out there with similar issues or advice???

REPLY

Hello, @kaseykalb, and welcome to Mayo Clinic Connect.

You might be interested in reading and participating in this discussion on narcolepsy for your daughter: https://connect.mayoclinic.org/discussion/narcolepsy-1/?pg=1#comment-122405

I'd like to tag @Jody3 @barsta in hopes they might return and share some of their insights on KLS. I'd also like to introduce you to @hopeful33250 and @johnbishop.

You mentioned this had been an ongoing battle, @kaseykalb. Wondering what have been the most challenging aspects of this syndrome for you and your son?

Hello @kaseykalb, I would like to add my welcome to Connect along with @lisalucier. I can't imagine how difficult it must be to fight such a long battle with not many answers available. I have obstructive sleep apnea but was not familiar with Kleine-Levin Syndrome. I did a little searching and found some information that I hope may be of some use:

NIH – Kleine-Levin Syndrome Information Page
https://www.ninds.nih.gov/Disorders/All-Disorders/Kleine-Levin-Syndrome-Information-Page

NIH – Kleine–Levin syndrome: Etiology, diagnosis, and treatment
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3021925/

National Organization for Rare Disorders – Kleine-Levin Syndrome
https://rarediseases.org/rare-diseases/kleine-levin-syndrome/

Another tool I like to use for researching health problems is Google Scholar (https://scholar.google.com/) because you can sort the results by year to get the newest information on research type topics. I did a search on Google Scholar using the terms Kleine–Levin syndrome researchers and here is the list of links it found:
https://scholar.google.com/scholar?hl=en&as_sdt=1%2C24&as_ylo=2018&as_vis=1&q=Kleine%E2%80%93Levin+syndrome+researchers&btnG=

I'm hoping that a member with personal experience can share some suggestions with you.

John

Hello @kaseykalb

Welcome to Mayo Connect. I have read your post as well as the information that @johnbishop posted regarding this rare disorder. This is my first introduction to Kleine-Levin Syndrome. I can certainly understand your wanting to connect with others who have shared this problem.

While I have never known of anyone with Kleine-Levin Syndrome I do realize how difficult it is to deal with a rare disorder of any type. It is difficult to find the diagnosis and also difficult to find appropriate treatment plans.

While you wait for others to respond to your question, I was wondering if you might share a bit more about this as you feel comfortable doing so.

For example, from what I understand about Kleine-Levin Syndrome it involves sleeping for long periods of time. Is this the way it affects your son? How does he take care of school, sports, etc., when he needs so much sleep? What type of specialist was able to diagnose Kleine-Levin Syndrome?

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