Guest guest Posted December 16, 2001 Report Share Posted December 16, 2001 Dear Janice, Oh, your message just makes me want to cry-I feel for you. I really do. If you need to talk, you can call me anytime . I am thinking that you may not know that there is a LGS group at Yahoo groups. It is a great group of support for families with LGS ranging in age and severity. I find it to be very helpful but also depressing at times b/c there are moms and dads on the site with older kids and they are not doing very well. But, there are also moms on the site w/young kids doing the keto diet. The basic idea that I gather from reading about LGS is that it is a progressive form of epilepsy that causes mental retardation and eventually, many seizure types that are uncontrollable. is one of the milder kids on the list. He was diagnosed with LGS from an EEG (it is an EEG diagnoses) and it has to do with the spike and wave pattern and abnormal background slowing. If you have the Freeman book about Epilepsy in Childhood, it show what an EEG for LGS looks like. hasn't had the LGS pattern since May, 1999. His EEGs have improved tremendously. Janice, you need to find a neuro that wants to fight it. Don't let them just tell you a grim diagnoses with no hope. We were so devastated that I just waited every day for to regress and to start having more seizures-it hasn't happened yet. We have to drive 4 hours to see a neuro but its worth it for us. Please feel free to email me personally or call- HUGS Quote Link to comment Share on other sites More sharing options...
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