A Huntingburg couple is suing the Indiana Department of Child Services workers who they say threatened to take their then 19-month-old daughter from their home because the parents were treating the toddler’s epilepsy with cannabidiol oil, not a medication suggested by medical doctors.
“This is for other parents who possibly could face the same situation we were facing,” Lelah Jerger said of the lawsuit, which she filed Monday with her husband, Jade. The American Civil Liberties Union of Indiana is representing their case.
“This is not just about CBD oil cases,” Lelah said. “Our goal is to make these people realize we’re families and humans, too.”
She added: “This is medical consent all the way and about being able to make an informed decision as a parent. It’s our right.”
Jade and Lelah told The Herald in late September that DCS’ Child Protective Services was bullying them by forcing them to give their daughter, Jaelah, Keppra — a drug they said has “horrible side effects,” to treat her epilepsy. The parents said cannabidiol oil, known as CBD oil, — which contains low amounts of THC, the psychoactive compound in marijuana that gives users a high — had already reduced her seizures significantly.
CPS then required Jaelah to have weekly blood draws to prove that the parents were giving the toddler, who turned 2 Friday, Keppra, the drug recommended by doctors at Riley Hospital for Children in Indianapolis. The Jergers claim that Riley Hospital doctors are the ones who turned them in to CPS for neglect, even though the couple had already switched Jaelah’s medical care to Norton Children’s Hospital in Louisville. CPS’s orders also required Jaelah’s medical care to remain at the Louisville hospital.
The Jergers’ complaint, filed Monday in U.S. District Court for the Southern District of Indiana, claims that the blood draw “represented a non-consensual search and seizure without a warrant,” and violated the Fourth Amendment.
The 11-page complaint also states that the requirement that Jaelah take Keppra “represents an infringement into the Jergers’ fundament familial relationship,” and violated the 14th Amendment. It also states that the requirement that the Jerger’s take Jaelah to the Louisville hospital also violates the 14th Amendment.
Jaelah was diagnosed with myoclonic epilepsy last July. The Epilepsy Foundation describes it as “shock-like jerks of a muscle or group of muscles.” Jaelah’s seizures last two to three seconds.
Immediately after diagnosis, the Jergers said doctors at Riley said Jaelah needed to immediately begin taking Keppra. Not familiar with the medication, the Jergers told the hospital they’d like to research some different methods of treatment before putting Jaelah on any medication.
Their research led them to the side effects of Keppra which WebMD lists as drowsiness, dizziness, unusual tiredness and weakness. More serious side effects are loss of coordination; mental/mood changes such as irritability, aggression, agitation, anger and anxiety, and signs of infection such as a sore throat, fever and chills.
The parents said they didn’t want that for their daughter. During their research, they also stumbled upon chiropractic neurology and took Jaelah to a chiropractic neurologist in Evansville who suggested the toddler take Charlotte’s Web, a hemp oil (CBD) extract, for her seizures. She began taking the supplement orally Aug. 5.
Lelah told The Herald in September that the CBD oil reduced Jaelah’s seizures from more than 50 a day to about two to four a day.
The Jergers said when the doctors in Indianapolis heard the couple was giving Jaelah the oil and not Keppra, they were not on board with it. The couple claims they were told that they were killing their daughter.
So, they sought a second opinion at the Louisville hospital. A doctor there said Jaelah could continue with the CBD oil, but she should also take a low dose of Keppra. The Jergers complied.
Then, CPS knocked on their door.
“They acted like we were following the seat of our pants, but we were following the chiropractic neurologist’s orders,” Lelah said of giving Jaelah CBD oil.
One of CPS’ requirements was that Jaelah have weekly blood draws to prove she was taking Keppra. If she wasn’t taking it, it would be deemed neglect and she would be taken from her parents.
Jaelah had one blood draw before the case was dropped, but Lelah calls the medical procedure “the worst part of the entire DCS investigation.
“Jaelah screamed,” the mother said. “They had to stick her a few times. When Jaelah gets stressed, it induces seizures. It was the most traumatizing experience.”
The case was dropped about a week later after State Sen. Mark Messmer, R-Jasper, got involved and contacted the Indiana Department of Child Services and the governor’s office.
Since the situation with CBD oil and CPS, Lelah has been a strong advocate for the oil and other medical consent issues. She’s lobbied at the Indiana Statehouse, where two CBD-related bills have already passed the House of Representatives and one has passed through the Senate.
She said she and Jade filed the lawsuit against DCS with the hope that the agency “can find a better system that works” in regard to investigating cases. She believes DCS jumped the gun on their case.
“We’re also doing this for other families, for them to know they can stand up for themselves, too,” Lelah said.
A call to the ACLU of Indiana and an email to a DCS spokesperson were not immediately returned for this story.