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.
4kristen
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Hi 4kristen, welcome to the forum. :hello:
Most AEDs are metabolized in the liver (like Dilantin). Does she have liver problems? Keppra is the only AED that I'm aware of that is metabolized in the kidneys. If it isn't working, I'd suggest looking at trying some alternatives like a seizure control diet, neurofeedback, etc. Have a look at the chart of alternative treatments for more info.
Most AEDs are metabolized in the liver (like Dilantin). Does she have liver problems? Keppra is the only AED that I'm aware of that is metabolized in the kidneys. If it isn't working, I'd suggest looking at trying some alternatives like a seizure control diet, neurofeedback, etc. Have a look at the chart of alternative treatments for more info.
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Hi 4kristen, welcome!
Unfortunately, it's not unusual for people with seizure disorders to go on a "medication merry-go-round" while trying to find the right med(s) and the right dosage. I hope your daughter's new epileptologist is able to be more helpful. Lamictal has worked for many people (I am on it), and it may well do the trick for your daughter. The process for tapering onto it needs to be "low and slow", so it can take time to get up to a working dose.
That said, I agree with Bernard that it's worth considering alternative approaches, with the hope of being able to at least lower the doses of the meds your daughter is on. It's also worth trying to see if there are particular triggers that your daughter is vulnerable too. Since she is a picky eater, I would suspect that low blood sugar may play a role, as it is a trigger for many.
Best,
Nakamova
Unfortunately, it's not unusual for people with seizure disorders to go on a "medication merry-go-round" while trying to find the right med(s) and the right dosage. I hope your daughter's new epileptologist is able to be more helpful. Lamictal has worked for many people (I am on it), and it may well do the trick for your daughter. The process for tapering onto it needs to be "low and slow", so it can take time to get up to a working dose.
That said, I agree with Bernard that it's worth considering alternative approaches, with the hope of being able to at least lower the doses of the meds your daughter is on. It's also worth trying to see if there are particular triggers that your daughter is vulnerable too. Since she is a picky eater, I would suspect that low blood sugar may play a role, as it is a trigger for many.
Best,
Nakamova
so sorry about all the seizures your daughter is having, I too have had the medicine circle going round and round for over thirty years, I am on keppra 1000mg am , 1500mg pm along with a low dose of dilantin 200 mg a night , and .25 mg klonopin, with out the dilantin in this mixture I have seizures, even though its a low dose , your daughters seizures sound so familiar, when she was on dilantin how long was she on it? after a period of time , your body is used to getting it and will pretty much throw a fit if taken off cold turkey, I had the pleasure of experiencing that , thanks to a doctor who didn't know any better, hope you find some answers