When Nazy and her daughter Kiana walked into my office recently, I couldn’t believe I was seeing the same child I met two years ago. When they initially came to my office, Kiana had already been on cannabis oil for a few months to treat her seizures, but her parents were frustrated by inconsistent results. They had seen some improvement with CBD but they were exhausted with the constant chaos her medical conditions and the side effects the medications were causing.
Nazy and her husband live in the San Fernando Valley with their only child, now eleven-year old daughter Kiana. When Kiana was born, the doctors suspected she had hypochondroplasia (a type of dwarfism), but it wasn’t a definitive diagnosis and it soon became evident that the baby had additional significant issues. At three days old, she was diagnosed with congenital hypothyroidism and immediately put on thyroid medication. Nazy remembers spending weeks in the hospital filled with anguish over what was unfolding as her baby underwent genetic testing that was inconclusive. Eventually, Kiana went home and at four months old received her first vaccinations. That evening, Nazy noticed what looked to be a seizure, but her doctor assured her that it was unlikely and unrelated to the vaccinations. Nazy believes that the doctors were used to her panicking and therefore dismissed her fears about seizure, and it wasn’t until Kiana was nine months old that the doctor agreed that the baby was experiencing seizures.
The family’s life changed, Nazy told me, when Kiana went into a long uncontrollable seizure (called status epilepticus) one morning while Nazy was driving. After calling 911, Kiana was transported to the hospital and admitted to the intensive care unit. Over the next three years she would be hospitalized multiple times, each time in status epilepticus. The only way the doctors could stop her seizures was to induce a coma, despite multiple treatment with multiple medications. By age 9, Kiana had tried 14 different drugs and combinations, all of which gave her terrible side effects, particularly behavioral. Nazy suspected her daughter’s extreme hyperactivity, disruptive behavior, head-banging, screaming and refusal to eat were due to the anticonvulsants she was taking, but her doctors dismissed her ideas and told her Kiana was a “very complex kid.” Genome sequencing did not reveal any specific diagnosis so the family was told Kiana had a refractory seizure disorder and hypochondroplasia. Brain surgery was recommended in lieu of other treatments.
Nazy was concerned about the possible risks with brain surgery and wanted to think about it before agreeing, so during the pre-testing and despite the neurologists’ conviction that there were no other options, she started researching alternative medicine and came across some articles about cannabis. Just when the hospital called to make a date for the surgery, Nazy insisted that she and her husband did not want the surgery and would try something different first. The doctors were upset with her, but she persisted. Around the same time the CNN documentary “Weed” aired with the story of Charlotte, a little girl in Colorado whose life-threatening and uncontrollable seizure disorder was finally controlled with CBD oil. “I decided this was IT,” Nazy said.
Ready to move to Colorado to try cannabis, Nazy discovered that she could obtain CBD oil in California. She started Kiana on the oil in August of 2013. Within one week, her daughter’s behavior changed. She became calmer. Within two months, her seizures lessened in both severity and duration. During the first six months, Kiana was weaned off one of her seizure medications and her parents saw even more improvement in both behavior and seizures. While she continues to take medication for her hypothyroidism, her thyroid levels stabilized, where they were once quite varied.
Kiana’s quality of life and that of her family improved so dramatically that it still feels almost unbelievable to Nazy and her husband. Despite years of speech therapy, Kiana was largely non-verbal, but within two months of taking cannabis medicine, she began talking. Nazy could leave the house with Kiana and take her on outings to the grocery store, to coffee shops and restaurants without seizures, meltdowns and disruption. The head banging and screaming stopped. She began eating again and even started feeding herself. Over the next eighteen months, her comprehension and alertness improved dramatically and, equally as important, she had long periods of seizure freedom. Her teachers and therapists are amazed by her progress and accomplishments. Nazy never imagined that Kiana would be able to read or write, and in that recent follow-up visit to my office, Kiana proudly wrote her full name and read a book to me.
“The quality of our life is astounding,” Nazy told me that day in my office. “Kiana was like a zombie before and I’d given up hope.”
Kiana is being weaned off the second anticonvulsant and continues to show amazing progress at school and at home. She is living a good life. Her family can’t imagine a day without cannabis medicine.