4kristen |
Last Activity: 10-28-2010 11:04 PM
About Me
- About 4kristen
- Seizure Background
- My 26 year old daughter has autism and now epilepsy. I am searching for some answers. Please help as I am scared to death.....
I am writing on behalf of my 25 year old daughter with autism. She has always been considered fairly high functioning. She hasn't had any health problems that anyone knew about until last October when she suffered a near fatal clonic seizure. She is about 100 pounds, 5 foot 2 inches, and always has been a picky eater. She lives in a small group home setting, an ICFMR. Last Fall, the girls working in the home were awakened by her sudden screaming as she slept just across the hall from their room. They went into her room and she was on the floor, had wet herself and was bleeding from her mouth and had thrown up. 911 was called and she was rushed to the hospital where they discovered she had a sub-arachnoid hemmorage, dislocated shoulder, broken jaw, and kidney and liver enzymes were through the roof. Throughout the day it became apparent she had rabdomylosis. CT scans confirmed the jaw and the brain hemmorage. Doctors thought she had a clonic seizure that must have lasted about 12-15 minutes. This came out of the blue. When she was about 8 years old, she had a couple of petit mal seizures and nothing since. This seizure nearly killed her and then the neuro put her on dilantin which put her liver in even more danger. She was in the hospital for nearly a month. The dilantin almost did her in, then the neuro switched her to Keppra. It seemed to do the trick. She was taking 1000 twice daily. She had another seizure in January, Keppra was increased to 1500 twice daily. She had another one in March, no medication change then another one in May, (lasting about a minute)and an alteration was made to her Keppra, 1000 in a.m. and 2000 at night since she only has seizures when she falls asleep or wakes up. She had another one 3 weeks later. (lasting about 30 seconds) Klonopin .5 was introduced at night. She had another one 2 weeks later. (lasting about 15 seconds). Her Keppra has been increased to 1000 in a.m., 1000 about 1:00 p.m., and 2000 at bedtime with .5 Klonopin at bedtime as well. She has had so many tests, including EEGs, which only showed up normal for a person with autism. New Dr. (premier epileptologist) in thinking about Lamictal and removing the klonopin. Has anyone had any experiences like this. I am scared for her life. Please help. ***The aforementioned was written in June of 2010 on Epilepsy.com forum. Today is 10/27/2010 and my daughters seizures have become more frequent. Two nights ago, she had 5 seizures. She is currently living in a group home consisting of 5 residents plus full time staff. Even while in the ER, she had 3 of those seizures awaiting her CT scan, chest x-ray and blood work which did not show anything out of the ordinary. She had a 5 hour sleep study performed last night , but didn't reach REM levels of sleep, so it was not eventful. Because of the incident of 5 seizures in one evening, she was given 20mg or cc(?) of Diastat which made her sleepy all day prior to sleep study. She was also give a Lunesta right after she was wired for sleep study. This sudden onset of seizures has me so worried. I would like to know what causes them rather than treating symptoms, but I realize I may never know. Please, anyone, if you have some suggestions of something you know that works..she has nighttime seizures, usually right after falling asleep. She yelps very loud, then the seizure follows. Please respond. - Treatments
- 4000 mg keppra, 1/4 mg klonapin daily
- Location
- Boise, ID
- Interests
- Art, movies, shopping, being with family