Christopher is a 17 year old boy with tuberous sclerosis. Since the age of 6 weeks old , he has had daily seizures. At one point he suffered from 80-100 seizures every day! At the age of 2 1/2, Chris had part of his right frontal lobe removed in an effort to control his seizures. This surgery, plus an out of country experimental medication, kept him controlled for a little while, but at puberty, the seizures returned.
Over the years, to control his epilepsy, Chris has also taken 19 anti-convulsants with varying degrees of success and failure. Several of them caused severe side effects including rashes, increased behavior, psychosis,violent rages, increased seizure activity and he once was hospitalized for liver damage. Last year, Chris had a vagus nerve stimulator implanted in an effort to get further control of his seizures. Although this device has helped many people gain control of their epilepsy , it has failed to do so for Chris leaving him with the same 3-8 daily seizures he has been struggling with.
At this point in time, Chris’ only option is a newer drug that already has two FDA black box warnings on it for irreversible blindness and blue skin pigmentation. It could also cause psychosis, and urinary bladder retention. These side effects are what are keeping us from trying it!
UPDATE March, 2014
Despite increasing his current dosages of medication, Chris continues to have 3-5 seizures daily. Recently, Chris was briefly hospitalized for a more severe seizure that he had while on the bus on the way to school. He also developed temporary balance issues as a side effect of the increase in dosage. As we are our of viable medication options at this time, we are retrying an old medication and crossing our fingers in hopes that it will help while we wait for medical cannabis to be approved in Pennsylvania! Please contact your legislator and urge them to support SB1182 on behalf of Christopher and thousands of other patients that could be helped.