Connellsville mom hopeful about medical marijuana amendments
A Connellsville mother who has fought for the legalization of medical marijuana for her daughter and others like her is feeling optimistic after the state House of Representatives passed amendments expanding the bill.
“I’d say the largest majority of us are pretty darn happy with the way it stands now,” said Julie Michaels.
Her 6-year-old daughter, Sydney, suffers from Dravet Syndrome, a rare seizure disorder that strikes in infancy.
Sydney was approved for a federal drug trial for CBD oil. CBD is a nonhallucinogenic component of marijuana with antioxidant properties.
Since Sydney began using the oil, her seizures decreased from about 3,000 each week to five to 15.
However, the seizures Sydney still has are often violent, called generalized tonic-clonic seizures or grand mal seizures.
“She still has good days and bad days,” Michaels said.
Sydney’s oil has a 200:1 ratio of CBD to THC, Michaels said. THC is the chemical responsible for marijuana’s effects.
“The Dravet kids seem to do a little better with a plant that’s about a 25:1 ratio,” she said. “Really, Sydney isn’t on the ideal ratio for her condition.”
Rep. Russ Diamond, R-Lebanon, altered the bill by removing a 10 percent cap for THC in medical marijuana Monday.
A final vote on the bill could come as early as today.
That amendment would allow Sydney more options to test what ratio works best for her condition, Michaels said.
She said they called the bill’s changes a “Hail Mary amendment.”
Diamond also offered an amendment that would add autism to the list of treatable conditions, which also passed.
“We are one of the very first states, really, to include autism as a treatable condition, so we are really, really excited about that,” she said.
Michaels said that once Sydney began using the CBD oil, her life has expanded drastically.
Her former medications did little to help her condition, but caused severe side effects.
Michaels said one medication caused Sydney to have a very sensitive gag reflex, which made eating difficult.
“She lost a lot of weight on that,” she said.
Other medications caused drowsiness and emotional instability.
“Cranky, irritable, screaming, uncontrollable crying,” Michaels said. “Gosh, there was just so much.”
For about two years, Sydney’s medication caused her to lose all expression. She said she didn’t see her daughter’s smile for two years.
“It was nice when that came back,” she said.
Before using the CBD oil, Michaels said her daughter’s seizures would be triggered by nearly anything sensory, such as temperature changes, baths, water, excitement, wind and light.
“She’s able to do so much more now than she was ever able to do,” Michaels said.
She said she is anxious to see what additional amendments are added and has high hopes the bill will pass.
“We had a lot of successes yesterday, some we weren’t expecting, so we’re pretty excited,” she said.