Encephalitis Cases
Sara
She was released 2 weeks later. They said she recovered miraculously. When they released her from the hospital she was on Dilantin and Acyclovir. I had to administer IV therapy for 2 more weeks. In December they took her off Dilantin being she never had any seizures.
On January 2nd she had a bad seizure that ended her up in the hospital and paralyzed her on the right side for more than 8 hours. From there, they started her back on Dilantin. She now was having Complex Partial Seizures. PCMC said she should possibly grow out of her seizures in about 2 years. She has had two 1-½ hour seizures. Her average seizure lasts approx. 20 min. They tried Tegretol on her but that never did a thing for her. In 1997 they started her on Depakote Sprinkles. This medication helped a little more with Dilantin. In 1998 they started Sara on Neurontin.
All of Sara's seizures start out with her seeing colors. Within the last year she has acquired another aura. She can now have a taste or colors before her seizures. In October 1999 they started to wean her off Dilantin and Neurontin. This almost took a whole year to do this. In the mean time they introduced the medication Topomax (Topiramate). This medication has taken her seizures from being in her arm to mainly being in her head and eyes. She is now only on Topomax and Depakote Sprinkles. Her seizures are on the right side of her body because her scar tissue is on her left side of her brain in her temporal lobe. Topomax has helped with her seizures. She still averages 5 - 10 minute seizures. She passes out after her seizures. We average 1 seizure a week. Some of her seizures are just her colors or just her taste. She still has a small headache after these auras (small seizures). Sara has already had 5 seizures this month. She had the worst seizure she has had in a long time on last Wednesday at school. Most of her seizures have been at school this year. Some are in the evening. Very rarely are they in the morning.
Sara is now 12 ½ years old. PCMC has told me that when she hits puberty the seizures will probably get worse, because her body is changing. This month might be a sign that she is getting ready to become a young lady. Sara is in 6th grade and 12 ½ years old now. She had to repeat 2nd grade because she had too many seizures that year. Every time Sara has a seizure she gets real immature and becomes younger in the brain for a day or so. She has struggle with friends every year.
This year she has 3 friends. This is more than she has ever had. She is a lot happier now. Last year Sara hit depression real bad. We are still working on the mood swings but she is a lot better now. One minute she likes you and the next minutes she hates you. If Sara gets stressed to a point then there is no turning back. PCMC says that Sara's brain doesn't know how to rationalize things. So if she gets too stressed then she breaks. Then it takes her quite a while to calm down. Usually no one can calm her down. She has to do that on her own. Some family members don't like to be around her because of her seizures. They think Sara is contagious. We have learned to live every day one day at a time. We are very happy that we still have our Sara with us. Mark & Peggy
Elko, Nevada, U.S.A.
Posted: Feb. 20, 2001
