Little Jaelah Jerger was diagnosed with myoclonic epileptic seizures in July at Riley Hospital for Children at Indiana University. The child was suffering up to 40 seizures a day. The neurologist prescribed the 20 month old toddler a drug called Keppra
Jaelah’s parents told the doctors that they wanted to do some research before committing to Keppra, being concerned about the side effects which included drowsiness, dizziness, unusual tiredness or weakness.
After researching and talking to other parents they discovered some parents were successfully treating their children with a legal plant extract called cannabidiol oil (CBD) without the bad side effects.
Jaelah’s parents found a chiropractic neurologist to consult with about the alternative treatment and were astonished by the results. Before too long, little Jaelah went from at least 40 noticeable seizures a day down to almost none.
They even reported that Jaelah had enjoyed 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 Child Protective Services for “not treating” their daughter. In so doing, set in motion a frightening chain of events.
CPS arrived on Sept. 20, formally ‘requesting’ that the parents agree to 1) keep Jaelah on Keppra. 2) take her for weekly blood tests to confirm she was taking Keppra and 3) to only see a specified physician.
CPS informed the Jergers that they would get a court order to remove Jaelah from their home if they did not comply.
CPS made contact again on Sept. 26, Mrs. Jerger said, telling the family to admit the girl to a specific hospital for symptoms from the Keppra medication.
Mrs. 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.”
The agency dropped the case Sept. 28, after Indiana State Senator Mark Messmer intervened by calling Danny Lopez, who is Governor Holcomb’s legislative director, and Mary Beth Bonaventura, the director of the Department of Child Services.
A spokesperson for Indiana Department of Child Services said that Child Services acted appropriately and stated that, “DCS is focused on ensuring child safety, and that was their focus here, as well,” “The agency resolved the issue once certain of the child’s safety.”
Senator Messmer sees it differently saying, “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.”
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.
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.
In this case, and unfortunately, too often, they should be called Child Un-Protective Services.
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Sources for this article: H/T Kaitlin Lange at IndyStar