weird sudden sleep episodes

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Joined: Sat Aug 17, 2013 11:21 pm

by katiesmum on Sat Aug 17, 2013 11:34 pm

weird sudden sleep episodes

My daughter is 15 and has been having strange sleep episodes for the past year. She will fall asleep with no warning, with each episode lasting a minute or so. When they started she would even do it standing up, with her body staying upright and just her head nodding.They can occur anywhere, at the top of the stairs, swimming pool, toilet . Over the past few weeks they have changed. She now loses muscle tone when they happen, she slumps and can fall off chairs, float horizontally in a pool, fall sideways in the shower. She also repeats random phrases, echos what is said to her, gets very emotional, confuses emotions, muddles flavours(mint/choc), her personality is changing and she now is very literal in her understanding, getting very upset at jokes or sarcasm. I was wondering if anyone has heard of these strange episodes being part of ME? We had eeg and sleep studies done and were given all clear. However, she didnt show any signs of these symptoms during these tests. We are desperate for any advice now as our bright intelligent daughter seems to be fading away before our eyes and we can do nothing to help her. We have reduced her activity to virtually nothing, school attendance was 18% last year, we follow a good sleep hygeine routine . Still no plateau....even using a wheelchair when going out of the house stops the progress of this relentless illness.