I hate them. It's like they are keeping Ben hostage. He is trying so hard to move and develop and learn. Every time he has a seizure, it just wipes him out. It wipes out his memory, his learning, and saps his energy. We still have a week and a half on Lamictal, the latest drug that we're trying. So far it doesn't seem to be working.
Luckily for him and us, Ben is still a happy little guy. Smiling all the time. He turns pages on books now!! Very exciting. We are told by every therapist who meets him that he's a quick learner. He just needs a break from these lightning storms in his brain.
It's been 14 months and 2 weeks since his first seizure. During these 14 months and 2 weeks, he has had anywhere from multiple seizures daily to 2 seizures a week. That's A LOT OF SEIZURES!!! Why can't we get them to stop? What else can we do? How much longer is this going to go on?
4 comments:
Have you tried diet, since it could be allergies? I too live in San Carlos, and know someone who her daughter was having similar symptoms, and it just diet.
Catherine, I want to take all your pain and frustration away and cure Ben. Would it help if we got together for a few hours, maybe took a walk and talked? I will be in the Redwood City area on 11/29, would be able to see you around noonish? Call me! Hang in there, you are a wonderful mother, and an amazingly stron women. There are so many people behind you cheering for Ben, please know that! Love you! XOXO Kristen
Hi Catherine, just wanted to let you know I'm thinking about you and Ben. Love Tamlin
Just checking in and wanted you to know we're thinking of you and Ben--sending all kinds of love and positive energy your way
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