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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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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.