ANSWERS: 6
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Here is where you can get some support: http://health.groups.yahoo.com/group/Hyperlex/
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It's a very rare genetic condition, caused by a mutation to the 5th chromosome, so you aren't likely to run into many people out there who have it. A rare genetic neurological disorder runs in my family too, a mutation of the 20th chromosome that causes tonic-clonic seizures in infants. Almost every family features some rare mutations that can result in disorders that no one else as heard of. In one sense you're fortunate because it's known what it is, in your family. If babies in your family have an exaggerated startle response you are somewhat prepared for it and know what it is. That doesn't make it any easier to deal with, but at least you can let doctors know your family history so they know where to start. Please don't think I'm making light of hyperexplexia by saying that.
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I have hyperexplexia and i have been searching for anyone who understood..im 20 years old and thinking about having a baby and i was wondering if it was possible with all of the drugs i have to take..is there any alternative??
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My nephew has been diagnosed with what they *think* is hyperexplexia (aka "dead tree sydrome" because of the manner in which the subject loses all muscle control and falls over like a tree). He has had innumerable EEGs & MRI scans at hospitals in Ottawa, Toronto and Montreal, and has been put on various drug regimes that more often than not, make him nauseaous. There was no sign of the condition throughout childhood and his teen years. He started experiencing falls in his late twenties and they've been increasing in frequency and severity (of injuries from the falls) in his thirties. Recently, episodes resembling epileptic seizures have occurred as a prelude to the "dead tree" falls. It seems that his condition is getting worse with time and there has been nothing that the doctors have been able to do to alleviate the onslaught. If anyone has any insights to share, I will certainly pass them on to my nephew and his family.
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How can you tell if your infant has it?
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