ANN ARBOR, Mich. – UPDATE: After Local 4's story aired, A University of Michigan Hospital doctor called the family and agreed to treat the girl, but would not prescribe medicinal marijuana.
Bella Chinonis, 6, suffers from 1p36 deletion syndrome, which means she's missing 21 different genes.
She has suffered grand mal seizures five to six times each month for her entire life. On Wednesday, her mother Ida gave her a carefully measured dose of cannabidiol oil. Ida said it gives her daughter relief without the pot high.
"She hasn't seized since I've been giving it to her," she said.
Bella spent six years under the care of a University of Michigan neurologist. Ida was not fond of the recommended treatments.
"On pharmaceutical drugs she was a zombie. She was lethargic, would not actively engage or look at you," said the mother.
Ida says the drugs didn't prevent seizures either. She wanted to try something new and called her doctor about it.
"(I told them) I want to try the medical marijuana, and they said, 'If you choose to do that then we will no longer treat her. We will have to discharge you,'" she said.
That's exactly what happened.
"Her whole attitude has completely changed. She's happier, she's engaged, her eye contact is focused more," said Ida.
Now Ida is looking for a doctor who will accept Bella knowing her medical marijuana usage. She's having trouble finding that doctor.
"I hope that more doctors will step forward and take care of pediatric patients. I think everybody deserves a chance to have a doctor no matter if they are on pharmaceutical drugs or medical marijuana," said Ida.
The University of Michigan Medical Center's spokesman said they are not able to speak about this specific case, but that University of Michigan physicians do not counsel patients to substitute medical marijuana for their prescription medications because at this time the drug is not FDA-approved and there is no solid scientific evidence proving benefits to patients.
Ida Chinonis is working with the National Patient Rights Association to find a doctor who will work with her.