[davesmom]

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.

[Chemar]

Hi davesmom and welcome to NeuroTalk

Dave sounds like a very courageous and talented young man.

I know you will receive much support and sharing of info and experience on our Epilepsy Forum here http://neurotalk.psychcentral.com/forumdisplay.php?f=11

[Jomar]

Nice to meet you, I was wondering if your son has any hobbies or something that he likes.
He could take classes on those as way to meet and make friends?
It sounds like he is very mature and responsible.
Is he a bit shy, my oldest is.

[Idealist]

It is very nice to meet you. I was totally captivated by the story of your son. It's always so sad to see someone so young become challenged by a chronic medical condition. But it sounds like your son is really quite a person. It's not easy to remain upbeat and cheerful, and continue to live so normally under those circumstances. And you, too, seem to have handled it all with a lot of courage. Kudos to you both!

I really wish I knew more about that area of medicine, but I simply don't. I sure do wish that your son finds some very good friends, and develops a satisfying social life. He needs to have some fun. Good luck to the both of you, and I promise you that when it comes to support, you will find that on this site. I hope you like it here and decide to stick around.

Idealist

[loisba]

Welcome, Dave's Mom, and hopefully, welcome to Dave, too. I hope you find the support you need at NT. The community is full of caring, helping people. Hope to talk to you again.
Hugs,

[Darlene]

davesmom,

I can feel the way he feels on the abandon by his friends. When I was 10 I developed seizures and have live with them since. A number of friends turned against me. I feel that I have grown from this because to me everyone here on earth has a handicapp of some kind, weather it will come early in life or later. When I come across some one with a problem I treat them with respect because of their problem, because that is what they need.

He sounds as though he he's a fighter, and that is great. I am sure he will make more friends, as I did. My best friend I have is my husband of 34 years.

You and him will find a lot of comfort and support here on the message board.

May God be with you both.

Here is a for both of you

Darlene