Christy was an energetic 3-year-old. She was playful and a little mischievous. She giggled and pulled anyone she could into tea parties. She loved going to Target, which she called "Targen," and if her mom drove by it, she’d say, "There’s Targen … Oh, no, you missed it."
She knew her shapes and colors and her numbers and letters. She was speaking in full sentences.
Now, at 12, she speaks in one, two, maybe three words. She can’t say her ABCs or write them. She runs up to strangers and yells, "Boo!" She holds her stuffed gingerbread man with a paper face of PBS Kids’ Daniel Tiger on top of it, and says "tiger" over and over again. She takes her father’s hand and leads him to the piano, where she bangs on it.
"It’s the only way she really knows how to engage with us," her mother, Jane, says.
Christy was 3½ when she was diagnosed with epilepsy. After four surgeries and more than 20 medications, she still has 10 seizures a night. Some medications made her "like a zombie," her mother says. Some made her so doped up she wasn’t able to lift her head and could only crawl on the floor. There was a year when she didn’t giggle or play.
Her parents say they had exhausted every medical option currently available. Then, in spring 2013, they tried cannabidiol, or CBD oil, the non-psychoactive element of marijuana.
During the next six months, they saw an improvement in Christy. She had fewer seizures and improved cognitively. She was able to answer more questions, and her responses were quicker.
There weren’t the side effects of other drugs, her parents say. Yet this conservative family, whose relationship with God as Christ’s followers informs how they live their lives, worried about getting caught and what that would do to their other children — Alice, 21, Joe, 19, and Lex, 16 — and to Christy. (These are not the real names of the family members and their last name is not being used in this story because medical marijuana use is not legal in Texas.)
Their supply dried up, and they watched Christy slowly return to being less verbal and having more seizures.
They and other parents like them want medical marijuana to be like any other drug a doctor prescribes. Now, they have found themselves as advocates for a hot-button issue, even though all they really want is to keep their daughter from withdrawing back into herself.
The seizures start
In December 2005, Jane and the children were in Wal-Mart shopping for fabric for Alice to make doll clothes. Christy had gotten sleepy and crawled on top of the bolts of fabric in the shopping cart. Suddenly, she jerked onto her back.
"It was like the baby startle response," Jane says. But Christy wasn’t responsive. She had had a couple of febrile seizures, those harmless seizures that happen when a child has a fever, but nothing like this. It lasted three to four minutes.
Jane knew what it was. "God had prepared us," she says. A good friend had a niece that was having seizures. Jane had done some research.
By the time Jane talked to Christy’s doctor, all evidence of the seizure had passed. She was given a referral for Christy to see a neurologist, but on the way home, Christy had another seizure and another until they were overlapping. This time, the doctor’s office told them to go to the children’s hospital, which at the time was at 15th Street and Interstate 35. They were at Slaughter Lane and RM 1826 in Southwest Austin.
An ice storm was starting, and everyone was trying to get home. I-35 was clogged. It took 45 minutes to get to the hospital.
It took a while to get the seizures to stop. Doctors had to sedate Christy, so deep that she stopped breathing. They couldn’t figure out what was causing them, but they gave her a diagnosis of atypical febrile seizures. They did not put her on medications because doctors thought it was a one-time thing.
Jane took Christy home, and slowly their lives got back to normal. "I had started to breathe again," Jane says.
Almost a month to the day, the seizures started again. This time, they put her on anti-seizure medications.
A bad kind of third
Epilepsy, which affects about 1 percent of children, is a disease of thirds, explains Dr. William Gilmer, a neurologist in Houston who is also the Texas Medical Association’s chair of the Council on Science and Public Health. At least a third of patients respond well to the first medicine doctors try. Another third respond well to another medication. Those two-thirds have well-controlled seizures.
Christy is in the last third. She has intractable or refractory epilepsy. It’s not controlled and resists medications. With epilepsy, the biggest question is about what is causing the seizures. They know that Christy has a mutation on one of her genes. It’s the same gene where the mutation for Dravet syndrome, an intractable epilepsy that starts before age 1, occurs. Christy’s started after she was 3. She also has some of the symptoms of Lennox-Gastaut, another seizure syndrome of early childhood.
As of yet, they still don’t have a label for what is causing her seizures.
Some medications have actually caused more and different kinds of seizures. Jane describes the seizures as like having repeated concussions. "It doesn’t give the brain time to recover," she says.
A few months after Christy was put on medications, she had lost all language. "Before, it was like, ‘Let’s have a tea party,’" Jane says. "Now, she was not smiling, she’s not playing."
Early on, the siblings developed roles. When Christy would have a seizure, Alice would be Jane’s right-hand woman; Joe would time the seizures and Lex would rest with her.
"They sort of found their places," Jane says. "As a family, we’re working as a team."
The family also had to make sacrifices as Jane was needed more and more to help Christy and as the bills were mounting.
Even though they had insurance, they quickly built up $18,000 in medical debt, which they finally were able to pay off last year. "At one point, we were paying 23 different providers," Jane says.
Now Christy’s care is covered by Medicaid under the Medically Dependent Children Program.
In November 2006, doctors implanted a Vagus Nerve Stimulator, which is like a pacemaker for the brain. When Christy’s brain is in an angry rhythm of seizures, Jane can swipe a magnet over the stimulator to disrupt that rhythm. There’s been no visible impact on the seizures for Christy, but it might be helping between seizures.
In 2007, doctors performed a corpus callosotomy, which removed all but a third of the connective tissues between her brain’s two lobes. They were trying to isolate the seizures and keep them from starting in one place and spreading quickly to another.
Two weeks after that surgery, the family was driving and Christy, strapped in her car seat, started to giggle at something. "We started laughing, and she started laughing," Jane says. "We hadn’t heard that in a year. We got part of her back."
Christy had two months without seizures.
But the brain found a way to rewire itself. "It went into the same patterns, and she was in almost the same condition after a year," Jane says.
In 2009, doctors cut out the remaining third of the connective tissue between the lobes. There was no noticeable change.
Christy’s functional abilities kept decreasing. The family traveled to Houston and did a magnetoencephalography, which gave them a 3-D image of the brain. They could see that the seizures were starting deep in the parietal lobe and following one of two pathways.
In 2011, doctors cut out a deck-of-cards-size area from the right parietal lobe and a half-dollar-size piece from the frontal lobe.
She lost some function in her left arm and leg. It was six months before she could walk or sit. She still limps and holds her left hand in a claw position, but her language engagement is much better, Jane says. The number of seizures did not go down, but the intensity did decrease.
Another tool in the arsenal
It was 2013, seven years since Christy was diagnosed with epilepsy, when Jane and her husband, Tony, decided to look at CBD oil.
They weren’t the only ones looking. CNN’s Dr. Sanjay Gupta created the documentary "Weed," which featured Charlotte Figi, a girl in Colorado who went from having 300 seizures a week to two or three a month using a specially formulated marijuana plant that has been renamed Charlotte’s Web.
"I still can’t watch that video," Jane says. "That was Christy."
Jane and Tony had friends with family who are licensed growers in Colorado and could get them an oil that was high in CBD but low in THC. They didn’t know the exact percentage, and it wasn’t the Charlotte’s Web strain, but they were willing to try it.
The oil was mailed to their friend and then passed along to them. They would give it to her once a day, at night when her seizures were the strongest. They worked up to giving 8 milliliters — a little less than a tablespoon — in her gastrostomy tube, through which medication is inserted into her stomach.
With other medications, "We would get some improvement, but it would never last," Jane says. One time they went 14 days without a seizure, but that medication caused her liver to start to fail.
With the CBD oil, the seizures started to decrease.
Even after they ran out at the end of October 2013, the effects of the oil lasted about another two months. In November, when Christy had pneumonia, they saw a real break. "We went from four to six seizures a night to none," Jane says. "To one seizure a day, to a couple a week."
"She was bright and energized," Jane says. She was making eye contact, and she was engaged. "A piece of her, we really got back," Jane says.
Teachers noticed it as well as her doctor. Jane couldn’t tell them why. There was always a fear of getting caught. If they did, what would happen to Christy and to their family?
A fire in the woods
The push for making a CBD-based medication available to patients with epilepsy, among other serious illnesses, is "huge," Jane says. "It’s like someone lit a fire in the woods."
Around the country, 23 states and the District of Columbia have some medical marijuana provisions. Texas is not one of them.
The Epilepsy Foundation issued a statement in February saying it wants patients and families to have access to physician-directed care, including medical marijuana, no matter what state they live in. It also wants an end to the Drug Enforcement Administration’s restrictions on limited clinical trials and research on medical marijuana for epilepsy. In Texas, the Texas Epilepsy Foundation wants the laws to change to allow its constituents to use CBD oil to control seizures.
Marijuana is considered a Schedule I drug by the DEA and the Food and Drug Administration, which means there is a high potential for abuse; it has no currently accepted medical use for treatment, and there is a lack of accepted safety for use of the drug under medical supervision. Other Schedule I drugs include heroin and ecstasy.
Heather Fazio, the Texas political director for the Marijuana Policy Project, says the project has drafted a bill that it hopes to get introduced in the 2015 legislative session. It is similar to the medical marijuana laws in Arizona and Nevada. It would provide for licensing of cultivation centers, where the plants are grown; laboratories to test the CBD and THC content of the plants; manufacturers for the oils and infused products such as muffins; and dispensaries, where people who medically qualify could buy the products. There would be a list of qualifying illnesses, epilepsy included, with the possibility for the state to add more.
Unlike the Texas Epilepsy Foundation, Marijuana Policy Project does not want CBD-only legislation. Some illnesses need a higher THC level than others, it argues. "CBD-only would leave out over 90 percent of the people who need it," Fazio says.
Instead, she says, it should be "up to the doctor and patient to decide what levels."
Jane also wants a whole plant rather than CBD-only law. "I want it to be like any other drug the doctor gets to prescribe," she says. "I want the doctor to determine what formula is right for her."
Jane is not for marijuana as a legal recreational drug. As a licensed counselor, she says, she’s seen firsthand the damage recreational use can do.
Texas Medical Association’s Gilmer says his organization is hesitant to support legislation because it doesn’t believe there have been enough studies and that the studies that have been done are more anecdotal. "We support well-controlled studies, and we support the physician’s right to discuss this with a patient without penalty," he says.
Good, quality, scientific studies haven’t happened, Gilmer says, because it’s been a Schedule I substance. "It’s been decided that it’s not fit to be used before we did any research," he says.
Research is important to know what the dosage is, what the CBD and THC percentages should be for each illness and what the potential side effects could be.
"It should be just the same as Tylenol … what’s the safe and effective dose if there is one?" Gilmer says. "We need to know."
Christy’s own doctor, Dave Clarke, an epileptologist, is hoping to get her into a new multisite FDA study that’s supposed to happen the first quarter of next year. It will test a CBD-only medication and is designed for people with Dravet and Lennox-Gastaut syndromes, but he believes Christy would qualify because of her similar symptoms and gene mutation.
"If you’re going to study it through the FDA, you have to pick something," Clarke says. "I don’t think it’s a bad idea to pick pure cannabidiol. It’s seemingly helpful."
Both Gilmer and Clarke are not for medical marijuana without it being doctor controlled. They do not want their patients to start sampling marijuana off the street, because patients wouldn’t know what they are getting.
"I’d rather them get something that is controlled, that we know what the dose is," Clarke says.
If patients do turn to using marijuana that is not prescribed, the Texas Medical Association wants doctors to be able to discuss its use with their patients without fear of penalty.
"It might affect our treatment or why someone is having a problem," he says. "We need to be able to discuss it openly and honestly."
A way of life
Christy’s family still hopes, though they know it might be unrealistic, to find the right combination of medications that will allow her to develop significantly, and that she could find productive work and even live in a group home. She does attend special education classes and is in the sixth grade, but the work she is doing is similar to what a preschooler might do. The family no longer believes Christy will catch up with her peers.
The older children have learned to be more self-sufficient. They learned to always get a ride to and from a school event because they couldn’t count on Jane to be there if something happened with Christy.
It has made them all very compassionate and concerned about others. "Nothing could make me love Christy less," Joe says. "It just feels like what’s supposed to be going on. It’s not an inconvenience; it’s a way of life."
They have also had to consider what will happen to Christy if they should die. Shortly after that seizures started, her parents put her on the waiting list for Community Living Assistance and Support Services for adult care. She’s number 14,427 on that list.
Even if she does get adult care, Alice knows that Christy will be her responsibility. "It started out as a joke," Jane says. "Alice prayed for a baby sister for seven years." And at first, she got two brothers. She was in the waiting room when her mom delivered Christy. "I used to tease you all the time," Jane says to Alice. "That’s your baby. She’s yours."
Alice says she doesn’t think about it. She’s always been the secondary caregiver, and at, 21, she can’t really think too far in the future.
There are aspects of Christy’s epilepsy that make them grieve different things. Jane says she’s so glad that Christy is now out of elementary school. All the class parties, class performances — Christy was in the background, if she could participate.
"It really is like we lost a child and we have a different child," Jane says. "The grief never really stops."
Yet there’s something very endearing about this Christy.
"Some people watch TV," Alice says. "We watch Christy."
"She drools, she walks funny, but oh, how people love her," Jane says. "Everywhere we go, people fall in love with her."
They also stare and sometimes make rude comments. Her family ignores the rude ones and tries to educate the people who stare.
Tony says Christy’s epilepsy has only strengthened his relationship with God. "He never promises that we’ll be without difficulty," Tony says. "She sacrificed a lot for our benefit. She’s a huge blessing."