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???

@momnxtdr

I see you. It's heartbreaking for all of us. I know several opt out of sleep studies because they give is scary info that is inconclusive. I'm not sure how I feel yet. Now that we have the diagnosis, quarterly may not be necessary.

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Hello, @momnxtdr – I also wanted to thank you for sharing your story with your son and his Kleine Levin syndrome.

I believe that @tiffanyb had some questions about whether your son was being seen by a sleep or neurology specialist at Mayo Clinic.

Wondering more about your son and the art therapy he is doing with his sister. Have you felt that this therapy has had any positive impact on his condition?

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@lisalucier

Hello, @momnxtdr – I also wanted to thank you for sharing your story with your son and his Kleine Levin syndrome.

I believe that @tiffanyb had some questions about whether your son was being seen by a sleep or neurology specialist at Mayo Clinic.

Wondering more about your son and the art therapy he is doing with his sister. Have you felt that this therapy has had any positive impact on his condition?

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We have not been to Mayo Clinic. We've done everything here in Dallas. Our doctors have consulted with Drs at Mayo Clinic, Cleveland Clinic, and Stanford. It's such a rare condition that my son was the first diagnosis at our Children's hospital. We are lucky that our pediatrician is so proactive.

My son had some neurological issues of not being able to write or jump after a 4 month episode. Our neurologist suggested art therapy, tennis, and swimming because it uses both sides of the brain. It's been a month and he can write his name and made a Fathers Day card. We are also doing some physical therapy. He's not jumping yet but definitely bouncing.

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@momnxtdr

We have not been to Mayo Clinic. We've done everything here in Dallas. Our doctors have consulted with Drs at Mayo Clinic, Cleveland Clinic, and Stanford. It's such a rare condition that my son was the first diagnosis at our Children's hospital. We are lucky that our pediatrician is so proactive.

My son had some neurological issues of not being able to write or jump after a 4 month episode. Our neurologist suggested art therapy, tennis, and swimming because it uses both sides of the brain. It's been a month and he can write his name and made a Fathers Day card. We are also doing some physical therapy. He's not jumping yet but definitely bouncing.

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We haven’t been to Mayo yet either, having a hard time getting in to see anyone. He was denied by psych and internal medicine, waiting in neuro and sleep. Our Children’s Hospital here in MN sends many labs to Mayo, my sons were. So glad art therapy is helping your son and daughter. My daughter (one of our trio) is really struggling, just shared with me her fears of him never being the same again. I’m reaching out to our care pastor at church, he’s also a hospital chaplain. Praying we can find support for her that’s meaningful.

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Has anyone tried Resperidone(sp?) to alleviate depersonalization symptoms with KLS?

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@tiffanyb

We haven’t been to Mayo yet either, having a hard time getting in to see anyone. He was denied by psych and internal medicine, waiting in neuro and sleep. Our Children’s Hospital here in MN sends many labs to Mayo, my sons were. So glad art therapy is helping your son and daughter. My daughter (one of our trio) is really struggling, just shared with me her fears of him never being the same again. I’m reaching out to our care pastor at church, he’s also a hospital chaplain. Praying we can find support for her that’s meaningful.

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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.

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

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@tiffanyb

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

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

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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.

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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.

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@vberkylynn

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.

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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?

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@vberkylynn

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.

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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

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