Kleine-Levin Syndrome

Posted by kaseykalb @kaseykalb, Sep 4, 2018

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???

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

momnxtdr | @momnxtdr | Jul 2, 2019

In reply to @tiffanyb "We haven’t been to Mayo yet either, having a hard time getting in to see anyone...." + (show)

I think support for the sibs is really important. My daughter was actually subconsciously mad at her brother for abandoning her in episode. They are now playing together again. She does have one toe out the door and gets really upset if he breaks his diet in fear of another.

tiffanyb | @tiffanyb | Jul 7, 2019

Our son started lithium two nights ago, low dose of 300mg. Praying this helps him get out of this mo th long episode!

Lisa Lucier, Moderator | @lisalucier | Jul 8, 2019

In reply to @tiffanyb "Our son started lithium two nights ago, low dose of 300mg. Praying this helps him get..." + (show)

@tiffanyb - how is he doing with the lithium so far?

tiffanyb | @tiffanyb | Jul 8, 2019

He’s doing fine, no side effects yet. Either it’s already helping or he’s just coming out of this episode. He will bump up to 600 mg tomorrow night. He seems much more calm, so thankful for that.

vberkylynn | @vberkylynn | Dec 4, 2019

Hi, I know this is a late reply. I just saw a news report about this disease and I can't help but wonder if it's related to Lyme disease or co-infections? Also, have you done an oats test from great plains labs? This test will show all kinds of imbalances in the body.

Lisa Lucier, Moderator | @lisalucier | Dec 6, 2019

In reply to @vberkylynn "Hi, I know this is a late reply. I just saw a news report about this..." + (show)

Hi, @vberkylynn - welcome to Mayo Clinic Connect. According to the National Institutes of Health, this disease's symptoms may be related to malfunction of the hypothalamus and thalamus, parts of the brain that govern appetite and sleep. This page on their website offers additional helpful information on this condition https://www.ninds.nih.gov/Disorders/All-Disorders/Kleine-Levin-Syndrome-Information-Page.

Hoping that members in this discussion on KLS might have some thoughts on your question about any relationship to Lyme disease or co-infections, or whether they or their loved one with KLS have undergone an organic acids (OATS) test. Please meet @tiffanyb @momnxtdr @kaseykalb @johnbishop @jenniferhunter.

Wondering if you have Kleine Levin Syndrome or if someone you know has this diagnosis?

John, Volunteer Mentor | @johnbishop | Dec 6, 2019

In reply to @vberkylynn "Hi, I know this is a late reply. I just saw a news report about this..." + (show)

Hi @vberkylynn -- Thanks for posting! I would like to add my welcome to Connect along with @lisalucier and other members. @jenniferhunter has a really good information post that includes links to testing for Lyme's disease and KLS a little earlier in this discussion that may also be helpful for members discussing KLS.
https://connect.mayoclinic.org/discussion/kleine-levin-syndrome-1/?pg=1#comment-283339