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Kleine-Levin Syndrome
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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Sorry for all the questions, but what does the acupuncturist work on?
Her focus is detox and brain clarity. I've taken him in a bad mood and he's come out laughing.
My son is 7. It started with EBV in December. The doctor expected him to be better in 10 days or so. When he continued to sleep for 15-20 hours we started seeing specialists. 13 doctors later, the immunologist referred him to a neurologist. That's who put him in the diet, probiotics, etc... that was 4 months in and with in 2 weeks he was out of episode. I am not sure if he had several or one long one. He was Homebound from school the entire 2nd semester.
I am working with an immunologist not a Nutricianist. His prebiotic is called Ultra Flora Integrity by Metagenics. He also had one BioK probiotic yogurt a day and drinks UltraFlamX shake from Metagenics. He does take 5mg of melatonin before bed.
Was he diagnosed with Kleine-Levin?
Yes! He's been confirmed and reconfirmed by neurologist and sleep experts.
Wow! I didn’t know it could be diagnosed after a long episode. It’s such a bizarre syndrome. I was told my son having three separate episodes was the way they diagnosed it. He had to havecoeriods in between where he showed no symptoms and was normal in all areas. Did your son have the derealization? That’s been the scariest for us.
That sounds awesome! I will definitely check in to this!
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.
Yes. He's only 7 so he describes it was "things don't make sense." "Sometimes everything looks blurry." Cognitively, he could be very alert and do math with me and take a test and get 100. The next day, he'd have zero recollection of the lesson. He also wasn't able to write for about a month. The neurologist told us to get him swimming and playing tennis. We did and it worked.