I have been a member of this forum for a few weeks and have reading the posts with interest and compassion. Back in november my daughter was diagnosed with what was thought to be episodic ataxia type 2, however, the genetics have come back normal so we are now in limbo.
She is 6.5 years old and first presented when she jumped into a swimming pool at school and was unable to swim, she then developed a terrible headache and look dreadful. Next day all of a sudden she couldn't coordinate to write and then developed a headache. After that things escalated with lots of different symptoms including spasms in an arm or a leg and also multiple episodes of acute confusion which were incredibly distressing. She is now on a maximum dose of acetazolamide and for 2 weeks she had no episodes but she had an episode of ataxia today. Does anyone have a child with similar symptoms and no diagnosis? We just don't know what the future holds.