Until her first seizure, Catherine's development was typical. At 3 1/2, she had a sudden and traumatic onset of very severe epilepsy, regularly requiring emergency treatment to stop the seizures. Within months, she lost language skills, and her motor skills were compromised by seizure activity and medication.
Over the last 8 years, we've had countless ER trips and more than 20 hospitalizations. Outside Catherine's regular neurologist, she's seen 6 additional specialists, had a Vagus Nerve Stimulator implanted; twice attempted a nasty, incredibly rigid and restrictive diet; undergone two brain surgeries to remove the connective tissue between the hemispheres of her brain, and a resective surgery to remove abnormal brain tissue. She's taken near toxic levels of 20+ different drugs singularly as well as in unnumbered combinations. Incredibly, none of this has had any lasting impact on her seizures.
Catherine's current medications cause weakness, drowsiness, dizziness, gait disturbances, impaired coordination and impaired balance, nausea, loss of appetite, impaired cognitive function, memory impairment and insomnia. One of them carries what is called a Black Box Warning because it can cause aplastic anemia, a life-threatening condition, and liver failure. On these medications, Catherine has been so medicated as to be unable to even crawl across the room or hold her head up, and was hospitalized when she was 5 years old because her liver was toxic and beginning to fail. Risk of sudden death among those with Epilepsy is twenty-four times greater than the general population.
Despite all our efforts, Catherine still has multiple seizures pretty much daily, and we are out of current medical options to try to gain better control. All the while, use of therapeutic cannabis is proving to be highly successful in these most difficult-to-treat children like Catherine, with great seizure reduction and even complete seizure control in some, and with NO SIDE EFFECTS.
The “Catherines” of Texas deserve access to this lifesaving option. Our families deserve a chance at hope and a better quality of life.
Can we count on you to support legislation that would give us that access?
Compassionate Access for Epilepsy (CAFE) is a project of the Epilepsy Foundation Texas affiliates. CAFE Texas brings together Texans and nonprofit organizations that support the therapeutic use of cannabidiol (CBD), a non-psychoactive component of cannabis, to treat epilepsy.