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Kleine Levin Syndrome – A parents Guide
"Those first four months saw us fighting an unknown battle, our son was sleeping excessively, always exhausted and operating in a dream... he was unable to do some things but had an incredible memory - it was like he was overloading his mind with data. Some people were suggesting he was just a lazy teenager but it was so much more. We saw our GP, a neurologist, psychiatrist, visited a private clinic in Harley Street, had various tests and were being passed from pillar to post with our "interesting case" that no one recognises and we were getting more and more desperate as parents. He was finally diagnosed by a fantastic pediatrician - what we described was not in the text book, but was KLS - a week later we saw her, had a provisional diagnoses and shortly after that our first episode ended... our son was surprised to realise it was Christmas, we celebrated together and then he went into his second episode before New Year - practically confirming the episodic nature of the condition."
This is our story and a selection of rescources we have found which have helped us on our way....