Parents fight to make daughter's medical decisions

Update: The medical neglect case documented in this story has been dropped. For an updated story, click here.

 

Photos by Brittney Lohmiller/The Herald
Nineteen-month-old Jaelah Jerger of Huntingburg was diagnosed with epilepsy in July. Jaelah’s parents, Lelah and Jade Jerger, were reluctant to give their daughter Keppra, a drug prescribed for the epilepsy, because of the side effects which include unusual tiredness and increased anger. The Jergers started giving Jaelah Charlotte’s Web, a hemp oil extract, which reduced the number of seizures.

By OLIVIA INGLE
oingle@dcherald.com

HUNTINGBURG — A Huntingburg couple is fighting for what they believe is their right — to make medical decisions for their 19-month-old daughter.

Jade and Lelah Jerger say Child Protective Services is forcing them to give their daughter, Jaelah, a drug with “horrible side effects” to treat her epilepsy, even though they say a natural hemp oil extract has reduced her seizures significantly.

“We found a natural method in this hemp oil and we saw it work,” Lelah said.

“We are being bullied,” Jade added. “That’s the easiest way to put it.”

Starting in September 2016, the Jergers — who have five children — repeatedly told Jaelah’s general physician that something was wrong. They told the doctor she had “an uncontrollable jerk of her body,” but claimed their “concerns were dismissed as nothing but ‘startled reflex.’”

Lelah gave Jaelah her nightly dose of Keppra before bed Monday evening in Huntingburg.

In May of this year, Lelah said Jaelah’s physician decided to send her to a specialist, a neurologist at a children’s hospital in Indianapolis. In July, an EEG confirmed that Jaelah has myoclonic epilepsy, which the Epilepsy Foundation describes as “shock-like jerks of a muscle or group of muscles.” Jade said Jaelah’s seizures last two to three seconds.

Immediately after diagnosis, the Jergers said doctors at the Indianapolis children’s hospital said Jaelah needed to immediately begin taking the medication Keppra. The Jergers said they told the hospital that they would like to research some different methods of treatment before putting Jaelah on any medication.

“We refused to put her on medication at that point,” Lelah said. “We wanted to research first. No one in our family has epilepsy.”

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.

“I was terrified,” Lelah said of reading about the side effects and hearing about “Keppra rage” — the anger and aggression caused by Keppra — from epilepsy support groups.

During their research, Jade and Lelah 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.

“The results were amazing,” Lelah said. “She went from 50 plus seizures a day to two to four a day. We were thrilled. And, that was on the lowest dose (of hemp oil extract) possible.”

The Herald reached out to several chiropractic neurologists for insight into the effects of hemp oil and why it's prescribed, however, phone calls were not returned.

After getting her nightly dose of Keppra, Jade and Lelah put Jaelah to bed. "She's hardly slept since she was put on Keppra," Lelah said. "We've hardly slept. When she does sleep it's fitful and not a deep sleep."

Hemp oil extract and something similar, CBD oil, have been controversial for a while 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.

Hemp oil is obtained by pressing seeds from the hemp plant — which is in the cannabis genus, along with marijuana plants. The amount of CBD — a cannabinoid in cannabis plants known for its health benefits — and THC in hemp is minimal, according to the Hemp Industries Association, which also says hemp oil is “legal to import, process, sell and consume in the U.S.” Hemp oil is typically used as an essential oil, in cooking and in body care products.

The neurologist suggested Jaelah take hemp oil extract because she didn’t meet the criteria the State of Indiana requires to be placed on the state’s CBD registry, which was established by state law last legislative session and went into effect July 1. The law requires a patient to have treatment-resistant epilepsy, meaning that two treatment options have been provided in good faith, to no avail. It allows those who are treatment-resistent to take marijuana-derived CBD oil — which is harvested directly from the cannabis flower and contains higher CBD and THC levels than hemp oil — and defends them from prosecution for possessing it.

Lelah said that as long as the hemp oil works for Jaelah, she and Jade will continue giving it to her.

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.

“We were told we were killing our daughter,” Lelah said about the couple refusing Keppra.

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 were reluctant, but said they agreed to try it. They said they then cut all ties with the Indianapolis children’s hospital.

Lelah said Jaelah starting taking Keppra Sept. 18. “She has been whiny, fussy,” Lelah said. “She’s not Jaelah, She’s tired. It’s not who she is and how she behaves.”

Since cutting ties with the Indianapolis hospital, the Jergers said the hospital has reported the couple to Child Protective Services “because we are not treating our daughter.”

Jade played with Jaelah in the family's living room Monday evening in Huntingburg.

The couple said CPS is forcing them to give Jaelah Keppra (even though they had already decided to put her on a low dose), and if they don’t, the child will be taken from their home. Jaelah must get blood drawn at Memorial Hospital and Health Care Center weekly to prove that she is taking the drug.

“Our rights are being violated completely,” Jade said. “There are no words to show or say the way I feel about being forced to do this to our daughter.”

Lelah said she and Jade are going to fight it and have set up a GoFundMe account for attorney fees.

“We are asking for help to hire an attorney to fight this,” she wrote on the GoFundMe page. “To get our rights back to treat our daughter with a method that may be controversial, but it is a treatment that works.”

In addition to the GoFundMe account, the Jergers have also started a Facebook page chronicling their efforts and are using the hashtags #JusticeForJaelah and #JergerStrong. They have also reached out to local legislators in a plea for help.

A call to CPS was not returned for this story; however, Indiana Code states that the Indiana Department of Child Services considers a case neglect when a “child’s physical or mental condition is seriously impaired or seriously endangered as a result of the parent/guardian/custodian being unable, refusing, or neglecting to supply the child with necessary food, clothing, shelter, medical care, education or supervision.”

Lelah said she and Jade know Jaelah better than anyone else and should have the right to decide her treatment. They want to make sure no other family has to go through what they are with CPS.

“We want to find the best, most effective treatment for our child,” Lelah said. “If this also helps another family, then we’ve accomplished something.”




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