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← Return to Kleine-Levin Syndrome
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Brain & Nervous System | Last Active: Dec 6, 2019 | Replies (47)
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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.
Replies to "Wow! I didn’t know it could be diagnosed after a long episode. It’s such a bizarre..."
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.
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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.