Hello. I'm new to the board. I found this site while paging through a magazine in my son's doctor's office. We've spent a lot of time there and in the hospital over the last 6 years.

Our son, Dave (23) started having seizures 6 years ago. He had one as a 2-1/2 year old, but it was said to be febrile and we put it out of our minds. Then while on vacation, he had a grand mal and we started on an extremely difficult journey. Dave has been diagnosed with Rasmussen's Encephalitis. He had surgery for it--not the one to remove half his brain, only a very small portion and it left him unable to speak for the most part--we communicate, but he has a lot of aphasia, word searching all the time. He was doing fine, however, returned to school, dealt with partial seizures every 4 months, but kept on plugging. Then 2 years ago, he had strong recurring partials and landed in the ICU on his 21st birthday. Since that time, he has had partial seizures in his right hand and arm 24/7. We joined a study in San Francisco last summer to try Rituxan. He is the first person in the US, second in the world to try this medication for this illness. We saw some relief, he started a second round of 4 doses at the beginning of April and completed the last one yesterday.

His speech difficulties have left him totally isolated and for the most part abandoned by friends. He is very cute, 6' 2, great sense of humor in spite of it all, works 2 jobs, has his own apartment, which he pays for on his own, and has a savings account better than mine! So he's a real trooper. I'd love to see him join something or have people invite him in, but that just hasn't happened so far. One dear friend has kept in touch with him; in fact, he's standing up for his wedding. But I'd sure like to find a way to get him to socialize. He's lonely. And this disease is bad enough without having to do everything by oneself.

I hope this site brings us some support, as there is very little attention to this disease. It's a rare one--thank God, but we don't have too many people to turn to.