The Alabama Legislature’s 2014 passage of Carly’s Law is providing hope to a mother whose young son is suffering with a debilitating seizure disorder.
Despite Caden Jackson’s young age, his mother Meggan and father Dustin have endured a long and hard road of regular doctor’s visits and filling prescriptions, hoping to find a cure for the seizures.
Caden’s potential cure may rest in a small bottle of cannabidiol, or CBD, which is derived from the cannabis plant. Passage of Carly’s Law enabled the University of Alabama in Birmingham, Ala., (UAB) to begin a study examining if CBD can be effectively used to treat seizure disorders in children and adults.
Caden is among the first of the state's patients to take the medication.
Four-year-old Carly Chandler, the girl who inspired Alabama’s first medicinal marijuana law, reportedly began her treatment in late April.
“When this started with him, we found out medical marijuana and cannabis was helping people with seizures,” Meggan Jackson said.
Because CBD is illegal in Alabama, the family was prepared to pull up roots and move to Colorado where Caden would have access to the drug.
“His doctor convinced us we needed to stay here because the stress of moving would make him worse,” she said.
Prior to October 2013, Caden was a normal, healthy young boy. He had a seizure when he was 18 months old, but doctors determined it was caused by a high fever. His parents were also told that such seizures can accompany a high fever.
He then began having absent seizures, in which the sufferer stares into space. Caden was given a prescription, and Jackson said his condition greatly improved. He loved school and was playing baseball like any other normal child his age.
On Oct. 21, 2013, he suffered a tonic-clonic seizure — a form of grand mal seizure — while playing outside. His concerned parents took him to doctors in Birmingham, Ala., and Memphis, Tenn., but doctors were unable to determine the cause.
“He’s gone downhill since then,” Jackson said. “He can barely talk, and some days he has problems walking.”
Last July, Caden underwent a procedure to install a neurostimulator box in his chest, which sends electrical impulses that stimulates the vagus nerve in the brain. Jackson said her young son still has anywhere from 35 to 40 seizures per day on a good day. On a bad day, he has 100 or more. In addition to the neurostimulator implant, Caden also takes 17 pills each day to help control the seizures.
After the passage of Carly’s Law, the Jacksons applied to be a part of the UAB study and were accepted. Caden received his first dose of CBD oil, called Epidiolex, just last week.
And though the CBD is still relatively new to Caden’s system, Jackson said she’s seeing some improvement in her son. On Mother’s Day, he had only 13 seizures, and he’s starting to notice his toys again.
“Seizure control is the primary thing we’re interested in,” she said when asked about her desired results from the CBD. “If we can get that under control, hopefully everything else will get better. I finally feel like we’re going uphill.”
What is CBD?
CBD, which is a liquid, is administered orally to patients who signed up for the UAB trial. According to website projectcbd.org, “CBD is a cannabis compound that has significant medical benefits, but does not make people feel ‘stoned.’” The group claims CBD can counteract the psychoactivity of tetrahydrocannabinol, or THC, which is the component that gets a marijuana user high.
“Scientific and clinical studies underscore CBD’s potential as a treatment for a wide range of conditions, including arthritis, diabetes, alcoholism, MS, chronic pain, schizophrenia, PTSD, antibiotic-resistant infections, epilepsy and other neurological disorders,” the site states. “CBD has demonstrated neuroprotective and neurogenic effects, and its anti-cancer properties are currently being investigated at several academic research centers in the United States and elsewhere.”
The medicine is not available in any traditional pharmacy, and the Jacksons can only pick it up at the pharmacy at UAB Hospital. Caden is currently receiving a relatively small dose of .5 milliliters per day, but Jackson said his dose could increase to 2.5 milliliters.
“(Doctors) still don’t know what the long-term effects will be, and we don’t know what’s going to happen,” Jackson said. “I would basically say, ‘If it was your child, you would understand why we’re doing what we’re doing. If you had to see the daily suffering. … We’ll try whatever we have to do.”
For more on UAB’s CBD study, visit http://www.uab.edu/medicine/neurology/research/uab-cannabidiol-program.
The Athens (Ala.) News Courier contributed details to this story.