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Posts (27)

Tue, Jul 2 9:12am · Kleine-Levin Syndrome in Brain & Nervous System

I think support for the sibs is really important. My daughter was actually subconsciously mad at her brother for abandoning her in episode. They are now playing together again. She does have one toe out the door and gets really upset if he breaks his diet in fear of another.

Mon, Jul 1 2:03pm · Kleine-Levin Syndrome in Brain & Nervous System

We have not been to Mayo Clinic. We've done everything here in Dallas. Our doctors have consulted with Drs at Mayo Clinic, Cleveland Clinic, and Stanford. It's such a rare condition that my son was the first diagnosis at our Children's hospital. We are lucky that our pediatrician is so proactive.

My son had some neurological issues of not being able to write or jump after a 4 month episode. Our neurologist suggested art therapy, tennis, and swimming because it uses both sides of the brain. It's been a month and he can write his name and made a Fathers Day card. We are also doing some physical therapy. He's not jumping yet but definitely bouncing.

Fri, Jun 28 10:23am · Kleine-Levin Syndrome in Brain & Nervous System

I see you. It's heartbreaking for all of us. I know several opt out of sleep studies because they give is scary info that is inconclusive. I'm not sure how I feel yet. Now that we have the diagnosis, quarterly may not be necessary.

Wed, Jun 26 8:41am · Kleine-Levin Syndrome in Brain & Nervous System

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.

Wed, Jun 26 7:56am · Kleine-Levin Syndrome in Brain & Nervous System

My son would say similar things but get very depressed. He'd get mad and say "I don't want to be here. I'd rather die." Thankfully, the Accupuncturist was able to help him with this.

Wed, Jun 26 7:53am · Kleine-Levin Syndrome in Brain & Nervous System

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.

Wed, Jun 26 7:48am · Kleine-Levin Syndrome in Brain & Nervous System

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.

Tue, Jun 25 8:22pm · Kleine-Levin Syndrome in Brain & Nervous System

Yes! He's been confirmed and reconfirmed by neurologist and sleep experts.