Kleine-Levin Syndrome

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?

Hello My 7 year old has been diagnosed with Kleine-Levin by a neurologist. He had EBV earlier and the doctor thinks it has gone dormant and now we are dealing with KLS. Does anyone have any experience with this? My son has now missed over 3 months of school and is Homebound. Previous to this, he was a very happy go lucky kids full of energy.

Hi, @momnxtdr - You may notice I combined your discussion with an existing one titled, "Kleine-Levin Syndrome." I did this so you could meet a few of the other members who have posted about this diagnosis. If you are responding by email you can click on VIEW & REPLY to see where your post is and to read through some of the other posts made by members on this topic.

Hoping that @kaseykalb @johnbishop @hopeful33250 will return and offer their support and talk about any experience with this disease, as it applies. @davidwhitehurstbrown @Jody3 @barsta @jenniferhunter may also have some thoughts to offer.

What would you say is your biggest concern for your 7-year-old son at this point, @momnxtdr - missing school? low energy? something else?

Hello @momnxtdr -- have you seen the Klein Levin Syndrome Foundation website? It has some good information and links to resources and research that may be helpful. Hoping others with some personal experience to share can offer some information for you.
https://klsfoundation.org/

Thank you! Yes, o peeked around last night.

Thank you for asking. I hadn’t thought of it in those terms before. My biggest concern is that I want him to have a normal life. I guess it’s social emotional. Academically, he has a Homebound teacher who comes twice a week. He has already passed the test to pass to second grade next year. I know he misses his friendships, teacher, sports, etc.. He slept through Spring Break. These things break my heart for him and I know it makes him feel sad. We are focusing on good diet and gut health. I also am concerned about my other 4 kids because it’s changed our family dynamics. He’s the youngest and they worry about him. They also miss him because he’s asleep most of the time.

@momnxtdr I found this literature on KLS that might be of interest. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3021925/

I would also like to ask questions and think outside the box about what causes may be behind your child's symptoms, and if any of this has not been ruled out, it may be worth a look. Sometimes a label can lead doctors down the wrong path and they stop looking for other causes for problems.

I read this literature to understand KLS and it talks about a lowered functioning activity in part of the brain, so that seems to make sense with the symptoms of exhaustion and sleeping a lot. What if the cause could be not enough circulation of oxygen rich blood? I know that when I'm getting less oxygen to my brain because of asthma and breathing issues, I can't stay awake. I read that this is a diagnosis of exclusion without a known cause, but it makes me wonder if there is something missed that is un-diagnosed that might contribute to low oxygen levels and if that may be in the entire body or just the brain. The finger monitors for oxygen saturation levels cost about $30 and you could easily test if there are changes in the body during episodes or a different times of the day or with changing activity. Low oxygen levels due to circulation problems contribute to dementia in aging people. There can also be congenital heart defects that cause a mixing of oxygenated and un-oxygenated blood like a hole in the heart, and it can go undetected until it gets worse with growth that can expand the defect and cause symptoms. I read a story like this about a puppy, and I know someone who was working to save a baby horse that had a heart defect and as it grew larger the problem became apparent and it didn't survive. You said your son was an active child and that changed after EBV and now he sleeps a lot which also could be a symptom of Lyme disease because it mimicks a lot of other problems and it misdiagnosed frequently.

Here is a symptom check for Lyme disease from the Igenex lab that has more accurate testing capability.
https://igenex.com/ticktalk/symptom-checker/
Information from the Igenex website about Lyme disease
https://igenex.com/ticktalk/2018/01/09/a-quick-overview-of-the-most-common-tick-borne-diseases/
I think it's important to ask questions rather than accept a diagnosis with an unknown cause and unknowns as to a cure. You mentioned a viral infection before symptoms started. Some infections can affect he heart. Lyme disease can affect the heart. It is often missed by testing that is inaccurate, and goes untreated. The ILADS group of doctors are specialists for Lyme. Here is their provider finder search
https://www.ilads.org/patient-care/provider-search/
Doctors don't understand why KLS happens and they are human and can miss things. They look for a differential diagnosis of what it could be if it isn't what they are looking for. Second opinions can be very different. I'm not a medical professional, but by advocating for myself and learning, I've been able to figure out what my doctors have missed, and some got it wrong. If there was a problem of circulation not supporting the brain, then all of the pathways from the heart to the brain, and the heart itself should be scanned to see if there is a defect somewhere. The literature doesn't mention ruling out circulatory issues as a possible cause of altered brain activity or physical exhaustion. There can also be abnormalities of circulation in the brain itself that imaging can find. Keep asking questions as to why a symptom happens and what may be other causes for other diseases and conditions of this symptom. Ask about the differential diagnosis and for an explanation of why it may have been ruled out. Overlapping symptoms can confuse what the real diagnosis is.

I'd also like to mention the experience of a person I know who was treated for years with Lithium, and higher doses of it. This caused significant kidney damage, and now as an older person in kidney failure, dialysis is required a few days a week. Drugs have side effects, sometimes serious, and it's always worth investigating if the risk is worth the benefit of taking the drug and asking questions. There may be safer alternatives if medication is needed, and maybe medication isn't needed all the time. This literature suggests possible environmental factors and it might be worth investigating any chemicals used on the premises or in building materials in your home or if there could be a problem like exposure to toxic mold. Exposure to mold causes swelling in my airways, triggering my asthma and lowering my ability to absorb oxygen in my lungs.

I do see an environmental medicine doctor which has helped me. If you wanted to consider that specialty that tries to prevent health problems (instead of treating symptoms with drugs) you can see the physician search at https://www.aaemonline.org/find.php
You can also contact https://www.ehcd.com/ Environmental Health Center in Dallas which is the practice started by a pioneering doctor in this field.

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.