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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???

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Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Mar 28, 2019
In reply to @momnxtdr "Thank you Jennifer. I will check into all this f these. Oxygen makes sense to me..." + (show)
@momnxtdr

Thank you Jennifer. I will check into all this f these. Oxygen makes sense to me and does heart given thank her my mom has congenital heart failure and uses a breathing machine. My son is having an EEG tomorrow. I will also discuss this with his Nuerologist then.

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@momnxtdr You're welcome. I hope you find some answers that help. God bless.

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pbledso24 | @pbledso24 | Jun 9, 2019

Hi! My daughter had KLS for approx. 4 yrs during her teens. She was put on Depakote her Sr yr of H.S. and thankfully she didnt have another episode.

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3 replies
Lisa Lucier | @lisalucier | Jun 10, 2019
In reply to @pbledso24 "Hi! My daughter had KLS for approx. 4 yrs during her teens. She was put on..." + (show)
@pbledso24

Hi! My daughter had KLS for approx. 4 yrs during her teens. She was put on Depakote her Sr yr of H.S. and thankfully she didnt have another episode.

Jump to this post

Hi, @pbledso24 - welcome to Mayo Clinic Connect. Thanks for sharing this experience with your daughter and Kleine–Levin syndrome (KLS).

What symptoms did she experience before her treatment? Has she had any side effects from the Valproic acid (Depakote)?

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momnxtdr | @momnxtdr | Jun 10, 2019
In reply to @pbledso24 "Hi! My daughter had KLS for approx. 4 yrs during her teens. She was put on..." + (show)
@pbledso24

Hi! My daughter had KLS for approx. 4 yrs during her teens. She was put on Depakote her Sr yr of H.S. and thankfully she didnt have another episode.

Jump to this post

I'm happy to hear she hasn't had any more episodes. We have been seeing an Accupuncturist and following Keto diet and he's been out of episode for about a month. We are focusing on healing his brain through his gut.

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tiffanyb | @tiffanyb | Jun 24, 2019

My 19 year old son started symptoms of KLS in Icti Oct 2018 while at college. He spent 2 weeks in the hospital, literally tested for everything! All was normal except elevated copper. He improved over three weeks, finished his semester at college, then relapsed. Same symptoms excessive sleep, feeling unreal, etc for two weeks again. He went back to college, took a full load of 16 credits, got all A’s, and moved home for summer. Once again, extreme fatigue (worse than ever) and severe sense of derealization. It’s been 2 weeks today and no sign of recovery yet. It’s SO terrifying and heartbreaking. There has to be hope, a chance at thus stopping and not happening again.

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2 replies
Lisa Lucier | @lisalucier | Jun 25, 2019
In reply to @tiffanyb "My 19 year old son started symptoms of KLS in Icti Oct 2018 while at college...." + (show)
@tiffanyb

My 19 year old son started symptoms of KLS in Icti Oct 2018 while at college. He spent 2 weeks in the hospital, literally tested for everything! All was normal except elevated copper. He improved over three weeks, finished his semester at college, then relapsed. Same symptoms excessive sleep, feeling unreal, etc for two weeks again. He went back to college, took a full load of 16 credits, got all A’s, and moved home for summer. Once again, extreme fatigue (worse than ever) and severe sense of derealization. It’s been 2 weeks today and no sign of recovery yet. It’s SO terrifying and heartbreaking. There has to be hope, a chance at thus stopping and not happening again.

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Hi, @tiffanyb - welcome to Mayo Clinic Connect. With your son's ups and downs with the Kleine Levin syndrome, I can imagine it's been heartbreaking.

I'd like to introduce you to some other members who've participated in this discussion, like @momnxtdr @pbledso24 @jenniferhunter @kaseykalb @hopeful33250 and others, who may have some thoughts for you as you've not seen any recovery for your son in the last 2 weeks since his extreme fatigue and severe sense of derealization. Though @ihatediabetes' son has a different diagnosis, she may also have some perspective for you, and @Jody3 @barsta also may have some input.

Will you share more about the derealization you've noted in your son?

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1 reply
momnxtdr | @momnxtdr | Jun 25, 2019
In reply to @tiffanyb "My 19 year old son started symptoms of KLS in Icti Oct 2018 while at college...." + (show)
@tiffanyb

My 19 year old son started symptoms of KLS in Icti Oct 2018 while at college. He spent 2 weeks in the hospital, literally tested for everything! All was normal except elevated copper. He improved over three weeks, finished his semester at college, then relapsed. Same symptoms excessive sleep, feeling unreal, etc for two weeks again. He went back to college, took a full load of 16 credits, got all A’s, and moved home for summer. Once again, extreme fatigue (worse than ever) and severe sense of derealization. It’s been 2 weeks today and no sign of recovery yet. It’s SO terrifying and heartbreaking. There has to be hope, a chance at thus stopping and not happening again.

Jump to this post

I'm sorry to hear that son is in episode. We've had great luck staying out of episode by focusing on my son's gut health. He is on the Keto diet, takes prebiotics and probiotics. He also sees an Accupuncturist.

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2 replies
tiffanyb | @tiffanyb | Jun 25, 2019
In reply to @lisalucier "Hi, @tiffanyb - welcome to Mayo Clinic Connect. With your son's ups and downs with the..." + (show)
@lisalucier

Hi, @tiffanyb - welcome to Mayo Clinic Connect. With your son's ups and downs with the Kleine Levin syndrome, I can imagine it's been heartbreaking.

I'd like to introduce you to some other members who've participated in this discussion, like @momnxtdr @pbledso24 @jenniferhunter @kaseykalb @hopeful33250 and others, who may have some thoughts for you as you've not seen any recovery for your son in the last 2 weeks since his extreme fatigue and severe sense of derealization. Though @ihatediabetes' son has a different diagnosis, she may also have some perspective for you, and @Jody3 @barsta also may have some input.

Will you share more about the derealization you've noted in your son?

Jump to this post

Thank you for that information!
My son feels like nothing is real, not him or anything around him. He says it feels like he’s in a movie. He says he feels like could do anything and it wouldn’t matter because he’s not real. He will actually pinch himself hard to see if he feels it. He gets startled very easily, too. This is totally not like him normally. He’s an outgoing, hilarious, empathetic, loves life kind of guy.

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1 reply
tiffanyb | @tiffanyb | Jun 25, 2019
In reply to @momnxtdr "I'm sorry to hear that son is in episode. We've had great luck staying out of..." + (show)
@momnxtdr

I'm sorry to hear that son is in episode. We've had great luck staying out of episode by focusing on my son's gut health. He is on the Keto diet, takes prebiotics and probiotics. He also sees an Accupuncturist.

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Can I ask the dosage for the pre/probiotics? Are you working with a nutritionist? So glad you have found him relief. How many episodes did he have?

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2 replies
tiffanyb | @tiffanyb | Jun 25, 2019
In reply to @pbledso24 "Hi! My daughter had KLS for approx. 4 yrs during her teens. She was put on..." + (show)
@pbledso24

Hi! My daughter had KLS for approx. 4 yrs during her teens. She was put on Depakote her Sr yr of H.S. and thankfully she didnt have another episode.

Jump to this post

Can I ask how many episodes she had total? Also, does she have any cognitive issues remaining?

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