Hi Kim,

Welcome to the group. You say that your son had a sleep deprived EEG,
was he actually asleep during the EEG? Kids with LKS will have an
abnormal sleeping EEG, with the typical continuous spike and wave
pattern. Some LKS kids will have a normal waking EEG. I think most
LKS kids will have a normal MRI, that was certainly the case with my
6 year old son Tai.

The next step is to get a overnight sleep EEG. I've heard that with
some LKS kids, the abnormalities only show up overnight, not during a
nap EEG.

You will also need to gather lots and lots of information! You may
well find that you will become more knowledgeable about this illness
than some of the docs, because it is so rare. Also, be prepared to
treat aggressively. My son and lots of other children have had great
success with steroids. The aim to to clear the EEG.

Where are you from? Its great that they are repeating the tests.

There is a great website with loads of info :

http://www.friendsoflks.com/

And these boards have lots of informative and knowledgeable parents:

http://health.groups.yahoo.com/group/lks/?yguid=159066648
http://health.groups.yahoo.com/group/RareEpilepsySyndromes/?
yguid=159066648
http://health.groups.yahoo.com/group/Folkslist/messages
http://brain.hastypastry.net/forums/forumdisplay.php?f=167

The first 2 are more busy than the second 2 but they are all worth a
look. Please let us know how you get on with the tests.

Best wishes

Sam