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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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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.