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???

@tiffanyb

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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My son would say similar things but get very depressed. He'd get mad and say "I don't want to be here. I'd rather die." Thankfully, the Accupuncturist was able to help him with this.

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@momnxtdr

My son had a few "good days" in between. That's why I said I wasn't sure how many. It was a very long 4 months and luckily we have a very progressive and persistent pediatrician. He was having phone consults with specialists all over the country. He was able to get appointments that were two months away moved up to a few days. Psychiatrist suggested antidepressants and Lithium. Neurologist suggested stimulants. Immunologist recommendation was to clean up gut and see what happens. We did and it has worked for over a month. I'm still nervous and walking on egg shells. I do my best to stay present. My son feels fine.

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You are blessed to have a great pediatrician! We feel the same about ours. When the first episode hit, we had to go pick him up from the ER at college an 1 1/2 away. I called our doc, he had everything taken care of back at our hospital so he could be admitted ASAP. He spent 2 weeks and literally 37 pages of tests in his chart! Not one sievialist even mentioned KLS! He was in 2 different hospitals to receive even more care. I found KLS (I’m a digging, researching mom as I’m sure you are!). Thank you for putting up with my questions and sharing. It’s hard to stay positive, but I’m trying as well. He is a triplet and the other 2 are now fearful they have it.

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@tiffanyb

You are blessed to have a great pediatrician! We feel the same about ours. When the first episode hit, we had to go pick him up from the ER at college an 1 1/2 away. I called our doc, he had everything taken care of back at our hospital so he could be admitted ASAP. He spent 2 weeks and literally 37 pages of tests in his chart! Not one sievialist even mentioned KLS! He was in 2 different hospitals to receive even more care. I found KLS (I’m a digging, researching mom as I’m sure you are!). Thank you for putting up with my questions and sharing. It’s hard to stay positive, but I’m trying as well. He is a triplet and the other 2 are now fearful they have it.

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Triplets! You are a super hero! I have 4. My kids are 7, 9, 13, and 17. My oldest has ADHD, diagnosed at 7, been processed food and low sugar ever since., Luckily, we've got experience with the run around of diagnosis. Yes, when our son first started sleeping 15 hours, he'd be awake from 1-5 am. I'd get up with him and feed him as much as I could and the wake up at 6 to get the rest of the kids to school. I think it was hardest on my 9 year old. She's very close to her brother and he'd be asleep when she left for school, got home, and went to bed. She really missed him and really shut down. I have them in art therapy together now because by the time he was out of episode, she was mad at him and felt abandoned. The older kids were concerned and had a better grasp of what was going on. It's definitely affected the whole family. I think in general we are closer now. My oldest had planned to go out of state to college and now he wants to stay closer to home.

Liked by Lisa Lucier

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Thank you for sharing your story, you are a wonderful mom! I feel I’m still in panic mode, not knowing how to help him yet. We just had an inland sleep study last night. They said he had many episodes of oxygen drops, not full on apnea, and many moments of wakefulness. He had a night terror caught on video, but he has done that his entire life! They found it surprising as it wasn’t during the part of Sleep he should do that. We haven’t had any guidance in what to start yet because they still want to run more tests. I hate watching him suffer and not at least bectrying sonething.

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@tiffanyb

Thank you for sharing your story, you are a wonderful mom! I feel I’m still in panic mode, not knowing how to help him yet. We just had an inland sleep study last night. They said he had many episodes of oxygen drops, not full on apnea, and many moments of wakefulness. He had a night terror caught on video, but he has done that his entire life! They found it surprising as it wasn’t during the part of Sleep he should do that. We haven’t had any guidance in what to start yet because they still want to run more tests. I hate watching him suffer and not at least bectrying sonething.

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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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We had to do an inlab study to get actual diagnosis. It terrified him.
Are you currently with sleep or neurology at Mayo?

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@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.

Liked by Lisa Lucier

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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!

Liked by Lisa Lucier

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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.

Liked by Lisa Lucier

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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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