The parents of a 20-month-old girl say Indiana child welfare authorities threatened to take the child away from them because they chose to treat her epilepsy with a legal cannabis extract.
Lelah Jerger, the child’s mother, said personnel at Riley Hospital for Children reported her to Indiana’s Child Protective Services after she and her husband decided to use cannabidiol oil, or CBD, to treat their daughter Jaelah, rather than use the medication prescribed by a Riley doctor.
Jerger said CPS dropped the case after a state legislator intervened and emphasized the legality of the treatment.
“Our daughter was never taken away from us, but the fear was horrible to live with,” Lelah Jerger said. “I would look outside my window just scared to death I would see a police officer and CPS here to take my kid.”
Gov. Eric Holcomb’s office said CPS acted appropriately, working to ensure the child’s safety. But state Rep. Mark Messmer, who intervened on behalf of the Jergers, said CPS overreacted.
The case raises more questions about what state officials consider to be the legal status of CBD oil — and whether medical professionals consider the substance to be a viable alternative to pharmaceuticals.
Conflicting interpretations of state law regarding CBD oil have emerged since Holcomb signed a bill in April creating a registry allowing Hoosiers with treatment-resistant epilepsy to use CBD products.
A short time later, the law enforcement arm of the Alcohol and Tobacco Commission used the law as justification for seizing the product from nearly 60 stores across the state, stating the law only allowed those on the registry to have CBD.
That, however, contradicts a 2014 industrial hemp law that Indiana State Police and advocates of CBD say legalized the substance as long as it contains less than .3 percent of THC, the ingredient that gives marijuana users their “high.”
Lelah Jerger said she wants to ensure other parents working to care for epileptic children aren’t living under cloud – especially when they’ve found a substance that they say significantly reduces their children’s seizures.
‘Justice for Jaelah’
When Jaelah was diagnosed with myoclonic seizures in July, a neurologist at Riley Hospital for Children recommended the drug Keppra.
Worried about side effects, Jerger said she told the doctors she wanted to do some research before committing to Keppra, which can cause drowsiness, dizziness, unusual tiredness or weakness.
After researching and talking to other moms who use CBD oil, she said she found a chiropractic neurologist in Evansville who put Jaelah on CBD oil.
Jerger later switched her daughter to Charlotte’s Web, a brand of CBD oil, after her daughter didn’t like the taste of the initial supplement. She used the Realm of Caring Foundation to calculate what dosage of Charlotte’s Web would be appropriate for Jaelah’s weight.
Jerger said she and her husband Jade were astonished by the results as Jaelah went from at least 40 noticeable seizures per day down to almost none. They said she’s had four completely seizure-free days since she started using CBD.
But medical personnel at Riley Hospital didn’t agree with their decision, Jerger said, and reported the family to CPS for “not treating” their daughter.
A Riley spokeswoman said she could not comment about a situation involving a patient.
CPS arrived at the Jergers house in Huntingburg on Sept. 20, formally asking the parents to agree to keep Jaelah on Keppra, to take her for weekly blood tests to confirm she was taking Keppra and to only see a specified physician, Lelah said.
Just days before CPS arrived, the Jergers said they had already decided to add Keppra to their CBD oil treatment after consulting with another neurologist.
Jerger said CPS said it would get a court order to remove Jaelah from their home if they did not comply.
CPS contacted that family again on Sept. 26, Jerger said, telling the family to admit the girl to a specific hospital for symptoms from the Keppra medication.
The agency dropped the case on Sept. 28, after Rep. Mark Messmer, R-Jasper, called Danny Lopez, Holcomb’s legislative director, and Mary Beth Bonaventura, the director of the Department of Child Services.
The Jergers are now seeing a neurologist at the University of Louisville who is monitoring their use of CBD oil. They are no longer using Keppra, and they are thankful to once again be able to make medical choices for their daughter.
CPS said confidentiality requirements prohibit it from discussing the specifics of the child’s case. However, it said it has no specific policy regarding the use of CBD to treat epileptic children.
Stephanie Wilson, a spokeswoman for Holcomb, said Child Protective Services and the Indiana Department of Child Services acted appropriately.
“DCS is focused on ensuring child safety, and that was their focus here, as well,” Wilson said. “The agency resolved the issue once certain of the child’s safety.”
Messmer sees the situation differently.
Jaelah Jerger was diagnosed with epilepsy this summer. Her parents decided to use CBD oil to treat her in lieu of pharmaceuticals. (Photo: provided by Lelah Jerger)
“They had overreacted based on a complaint from the nurse practitioner in this case and should have approached it more cautiously than they did,” Messmer said. “I saw it as extremely heavy handed and over reach on the part of DCS.”
Jerger wants CPS to be held accountable for what she sees as wrongdoing by the agency. She has started Facebook pages called “Justice for Lelah” and “Parents for DCS Reform” to bring attention to the situation.
“Our hope in this whole mess is that no other family will ever have to go through this,” she posted on the page. “If a product is legal and works, then something needs to be done to prevent CPS or hospitals from reporting it.”
CBD vs. standard medication
For doctors, the decision on whether to use CBD oil to treat epileptic patients is even more complex, as they worry about the legality of the product and the well-being of their patients.
While there are studies and anecdotal evidence suggesting that CBD helps reduce seizures and pain, the product has not been approved by the Food and Drug Administration. The FDA does acknowledge that a drug containing CBD from GW Pharma has had successful clinical trials so far, and could be approved in the near future.
However, the FDA also doesn’t completely rule out using the product for patients with epilepsy, prior to its approval.
“The FDA understands the interest in making investigational products available to patients while they are being studied for approval, and there are expanded access provisions in both the FDA’s statute and its regulations to make this possible,” the FDA states on its website.
Thomas Vidic, a neurologist from Elkhart Indiana and a past president of Indiana State Medical Association, said CBD might be useful in the future, and studies have shown it may be effective in certain types of childhood epilepsy. But for now, he said, physicians should be using “known proven medication.”
“Under no circumstances should this substance get in the way of using established anti-epileptic medications,” Vidic said.
Part of the problem, he said, is that the product could have negative interactions with other drugs and there could be unknown side effects.
The Indiana State Medical Association itself has no policy on CBD, but emphasizes that doctors need to follow the law and “take care of patients with known scientific data,” Vidic said.
Michael Brady, ISMA’s director of advocacy, said their team has only received one question from a doctor on the legality of the product. Their attorney’s advice was to wait until Attorney General Curtis Hill issues a legal opinion on the legality of CBD.
Hill’s office said in July it is working on providing a legal opinion on CBD and will issue one in the “very near future.”
Messmer, who voted for the 2017 CBD law that created the registry, acknowledges the legislation likely wasn’t clear enough and needs to be clarified.
“The medical community and the ATC are probably going to make changes to how they view CBD oil only if directed by the legislature to do so,” Messmer said. “I don’t see that change happening without some direction from the legislature.”