Lelah Jerger, of Huntingburg, Indiana, says she’s watched her young daughter, Jaelah, suffer about 30 seizures a day since she was at least 6 months old.
“Her seizures are quick jerks. They’re one to two second jerks of her arms. She’s only two so she can’t really tell us if they’re painful, but sometimes she’ll cry right after she has them,” Lelah, 32, tells PEOPLE. “She’d just be walking around and all of a sudden she twitches. It was terrifying.”
Lelah and her husband, Jade Jerger, 34, took the little girl to doctors who dismissed the family’s concerns, according to the mom, saying “there was nothing wrong with” Jaelah.
The mystery spasms continued and, nine months later, Jaelah fell and hit her head as a result of one of the seizures. Concerned, Lelah and Jade took the girl back to doctors and demanded an answer. Soon, a neurologist diagnosed Jaelah with epilepsy.
“She has a rare type of epilepsy called benign myoclonic epilepsy in infancy,” Lelah explains, noting that she experienced mixed emotions when she first learned of her daughter’s condition. “I was relieved and scared. Finally we knew what we were dealing with, but we were scared because we didn’t know anything about epilepsy at all.”
Doctors prescribed Keppra — the brand name for Levetiracetam — to treat Jaelah. The drug is approved by the Food and Drug Administration, but Lelah says she became wary of the treatment after learning of its side effects: depression, suicidal thoughts, severe anxiety and inability to cope with daily life, according to the Epilepsy Foundation.
Dr. Courtney Wusthoff, assistant professor of neurology and neurological sciences at Stanford’s Division of Child Neurology, says that the most common effects of Keppra are much more minor, and include things like mood and behavior change. She notes that more serious adverse reactions “are possible, but rare.”
Wusthoff — who is not involved in Jaelah’s treatment and couldn’t comment on her case specifically — tells PEOPLE that “for most children diagnosed with epilepsy, conventional medications succeed in controlling seizures.”
She adds, “At the same time, for up to one-third of patients with epilepsy, seizures are not fully controlled by medication. For families of children with epilepsy that has been uncontrolled by medication, interest in alternative treatments is especially high.”
Jaelah and Jade found such an alternative treatment by searching online, where they learned about cannabis oil — an extract from the cannabis plant — and purchased the substance from a Colorado-based company called CW Hemp. CBD is different than THC (tetrahydrocannabinol), which is also found in marijuana.
The Jergers purchased the oil from a Colorado-based company in August 2017 and immediately began giving Jaelah drops of the substance twice a day.
“We saw immediate results. We had a 95 percent reduction in seizures right of the bat. We didn’t have any negative side effects. She was a normal 2-year-old!” Lelah says. “We’ve had absolutely no difference in Jaelah besides a reduction in seizures. We’re very grateful that we came across it.”
Wusthoff tells PEOPLE that, “There has been evidence that CBD may help to reduce seizure frequency in certain types of epilepsy.”
Still, she notes caution when it comes to “quality control.”
Echoes Dr. Inna Hughes — assistant professor of child neurology and pediatric epilepsy at University of Rochester Medical Center, who also is not involved with Jaelah’s treatment —that without FDA or other oversight, there is no guarantee “that the product desired is the one in the bottle and what the appropriate dosing should be.”
There’s also the potential for negative side effects, even though CBD is not a conventional medical treatment. “Up to 20 percent of patients who try CBD for epilepsy have diarrhea as a side effect,” says Wusthoff. “Fatigue and lethargy are other most common side effects.”
In March, Indiana legalized low-THC cannabidiol oil as long as it meets requirements regarding labeling and THC percentage, according to the Indianapolis Star. However, the state’s law doesn’t allow its use for children with the rare form of epilepsy. Believing the oil to be completely legal for Jaelah, Lelah and Jade excitedly told doctors in September about the success of the treatment.
They Said ‘They Would Take Her’
Lelah says the medical officials seemed to be on board with the oil. According to the mom of five, one doctor even said “If it’s working, use it!” However, Lelah adds, the doctors soon changed their tune and contacted Child Protective Services. And, she says, CPS officials were at their home the next day.
“[They said] … they would take her. We were scared to death that they were not only going to take Jaelah but take our other kids too,” Jerger tells PEOPLE, noting that officials allegedly did not prohibit them from using the oil, but ordered the parents to give the little girl Keppra as well.
So, they did. And about five days after the CPS visit, Jaelah began suffering side effects from the drug, Jerger says.
“We had to admit Jaelah into the hospital to have her taken off the medication because she was throwing up, she wasn’t eating, she wasn’t acting like her normal self,” Jerger tells PEOPLE. “She would walk around the house crying for no reason. That wasn’t what we were used to seeing out of Jaelah.”
Wusthoff tells PEOPLE that “a challenge in treating epilepsy is that we don’t yet have a way to know up front which children will do well on a particular medication, or which children will experience side effects.”
“Families and physicians work together to try medications, always hoping the first medicine tried will lead to no seizures and no side effects,” she says. “When that doesn’t happen, it is certainly frustrating.”
The couple stopped giving Jaelah Keppra, but continued to treat her using the oil. Lelah says Jaelah’s condition has improved, but the family lives in constant fear that CPS officials will return as a result of the treatment.
“It’s a natural fear now. I still have nightmares about [their visit]. I have anxiety about it and I keep my doors locked. The aftermath of dealing with CPS is real, but we’re trying to live as normal as possible,” she says.
“Jaelah isn’t getting high off the product and that’s what makes it legal in our state. Unless you’re walking in our footsteps or have lived the life we live, I don’t think anyone has the right to judge. This is not marijuana.”
The parents have filed a lawsuit against CPS, alleging that officials took a blood sample from Jaelah without a warrant and prohibited them from seeing more than one doctor, Jerger says. The 11-page complaint was filed in February in U.S. Southern District Court, according to the Indianapolis Star.
CPS officials did not immediately respond to a request for comment from PEOPLE.