Tell us about yourself and the patient in your life:
Amanda was diagnosed 2 years ago, she is 35. Amanda had her first grandmal seizure at 4months. I believe having 2 older kids, I worked harder with Amanda. Her 1st seizure drug was phenobarbital. After 6 months I chose to take her off of it. She just sat there in a zombie state. She took carbatrol and tegratol through her toddler years and added valproic later. The meds did keep her seizures under control. Her big cluster seizures were at 5-10-15-20-25.
Her meds or what I call cocktail of drugs has changed over the years. We did find out valproic and carbatrol affected her kidneys. We have been tracking her seizures she has clusters every other month now. We treat her cluster seizures and non sleep nights with loranzzapan. She can go up to 4 nights with non sleep, her cluster seizures are usually the week before her menstrual.
What is your hope for the future for your loved one:
Amanda is now 35, she continues to live with us in Aloha Oregon. We do many fun activities, we go camping, travel, she flew to Chicago for her brother’s boot camp graduation. Amanda also would fly on a plane at least once a year with me to visit my parents. It was a 45 minute flight, she loved it and did well. We have done overnight stays at the beach. We always get a view window, loves looking at the ocean very calming. After she turned 21, we went to casinos, she loved the noise. the machine made. Amanda said, more money Please she knows no money no noise Amanda would go to the grocery store and shopping , but since pandemic. We take car rides turn the music up and buy a drink or snack sometimes. When we come back, she says Fun! Amanda receives lots of love and care from her family. Her older bother and sister are a big part of her life.
My hope is for Amanda to have more good days of health and seizure free. Then not so good days, able to sleep. On those nights I sleep with her or Disney Channel is our friend.