Neglect case dropped but frustration remainsOctober 11, 2017
By OLIVIA INGLE
HUNTINGBURG — A Huntingburg couple can once again make medical decisions for their 20-month-old daughter after their medical neglect case with Child Protective Services was closed more than a week ago because of what the couple was told was “refuted evidence.”
“We’re still trying to figure out what ‘refuted evidence’ means,” said Lelah Jerger, mother to Jaelah.
Lelah and her husband, Jade, claimed late last month that CPS was bullying them by forcing them to give Jaelah a drug with “horrible side effects” to treat her epilepsy, even though they said a natural hemp oil extract had already reduced her seizures significantly.
“It was us doing what we have to do for our kid,” Lelah said Tuesday. “For them to consider it medical neglect, it’s not fair for any parent out there. We were doing everything we can to make sure Jaelah has safe and effective treatment.”
In July of this year, Jaelah was diagnosed with myoclonic epilepsy at a children’s hospital in Indianapolis. The Epilepsy Foundation describes myoclonic epilepsy as “shock-like jerks of a muscle or group of muscles.”
After diagnosis, doctors at the Indianapolis hospital said Jaelah needed to immediately begin taking the medication Keppra. The Jergers told the hospital that they first wanted to research some different methods of treatment.
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 couple didn’t want to risk those side effects for their daughter. Through their research, they also learned of chiropractic neurology and took Jaelah to a chiropractic neurologist in Evansville who suggested the toddler take Charlotte’s Web, a hemp oil extract, for her seizures. She began taking the supplement orally Aug. 5 and Lelah said her seizures dropped from more than 50 a day to two to four a day.
Hemp oil extract and something similar, CBD oil, have been controversial because they contain low amounts of THC, the psychoactive compound in marijuana that gives users a high. Marijuana is illegal in Indiana; however, hemp is not. State law legalized CBD oil for certain medical conditions in July, but only under certain criteria which Jaelah didn’t meet.
So, the couple sought a second opinion at a Louisville children’s hospital. That doctor agreed to keep Jaelah on the hemp oil extract, but also suggested adding a low dose of Keppra. The Jergers reluctantly agreed. They cut all ties to the Indianapolis hospital.
Jaelah started taking Keppra Sept. 18, but became whiny, fussy and tired, Lelah said.
After the Jergers cut ties with the Indianapolis hospital, the hospital reported the couple to Child Protective Services “because we are not treating our daughter.”
CPS told the couple they had to give Jaelah Keppra (even though they had already decided to put her on a low dose), and if they didn’t, the child would be taken from their home. The agency also ordered that Jaelah get blood drawn at Memorial Hospital and Health Care Center weekly to prove that she was taking the drug.
Messmer met with the family to hear their story.
“In my opinion, it seemed to be quite unjustified,” Messmer said Monday. “All they were asking for was some time to get some second opinions.”
He said he talked to the head of the state’s Department of Child Services, which oversees CPS, to ask the agency to consider pulling back on the couple’s hearing for the neglect charges. He also reached out to Gov. Eric Holcomb’s staff.
Meanwhile, the Jergers took Jaelah to the Louisville hospital to have a 24-hour EEG to monitor her seizure activity. Lelah said Jaelah had one myoclonic seizure during the 24 hours.
“The neurologist even said he had a hard time classifying it as a seizure,” Lelah said. “It was kind of an in-your-face type of thing (for the Indianapolis hospital and CPS).”
She said the results further confirmed the couple’s stance of not wanting to give Jaelah Keppra and see her suffer the side effects.
Since the Jergers’ CPS case was closed Sept. 28, Jaelah has quit taking Keppra and is continuing with a higher dosage of hemp oil. Lelah said the toddler is back to her bubbly self, and while she isn’t seizure-free, the episodes still come less frequently.
“We’ve got our baby back,” Lelah said. “She’s happy. She’s eating like crazy. The crying’s gone. It makes us happier than anything to have Jaelah back.”
The next step, Lelah said, will be to work with Jaelah’s neurologist to find the best therapeutic dose of hemp oil for her.
“We’ll follow up with the neurologist medically to formulate a plan that works for Jaelah,” Lelah said. “And, legally, we’ll leave (those next steps) for our attorney.”
Lelah said she’s not sure whether it was Jaelah’s EEG results, Messmer’s involvement or a combination of both that contributed to the “refuted evidence” and getting the CPS case closed
Messmer said he’s never had a constituent call him about a situation like the Jergers’.
“It seemed to fly in the face of parental rights,” Messmer said. “Nobody knows their child better than the parents. It was quite an overreach for them to mandate a treatment.”
He said this “is an example of quick judgment and heavy-handedness with a state agency.”
“More times than not, when legislative members intervene, agencies take a second look,” Messmer said, also saying that he thinks there will be more discussion at the state level regarding CBD and hemp oil as viable treatment options.
“I’m not a real political person, but calling Mark (Messmer) was the best decision we ever made,” Lelah said. “He went above and beyond and showed he really cares about families.”
Even though the Jergers no longer have to live in fear of CPS taking Jaelah, Lelah said she’s not sure when her anger will fade, or if it ever will.
“They wrecked our lives,” she said of the situation. “We were scared to death.”
She wants parents to understand that they have rights when it comes to medical decisions for their children and they need to speak up.
“Hopefully something will come from this,” she said. “Parents will know they have the right to seek a second opinion. Hopefully something good will come out of this complete mess they just put our family through. It literally turned our world upside down.”
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