Out of options, parents turn to marijuana to treat baby
Told there were no more options to treat their infant daughter who suffered life-threatening seizures, a Ramona couple refused to accept that, turning in desperation to a form of medical marijuana. The results, they said, have been miraculous.
“She is just doing tremendously well,” said Brian Higuera.
On Monday, Sadie Higuera will celebrate her second birthday. She is almost seizure-free and can now interact with family members, according to her parents.
Sadie was born with a rare genetic disorder called Schnizel Giedeon Syndrome. Brian said it basically affects every cell in her body.
Seizures and tumors are the biggest issues, he said. Their little girl could have as many as 300 seizures a day. Her eyes would twitch so much that she usually kept them closed, he said.
“Every day she would turn purple at certain times. We never knew when the last one was,” said Brian.
Every night they wondered if that would be her last.
“It used to be hard to sleep,” he said. “We wanted to spend every moment we could. We don’t live in that moment now. We cherish the moment.”
The decision to treat her with cannabidiol oil, known as CBD, was not an easy one for the Higueras. And, while they realize some people may be critical of their choice, the Higueras hope that in telling their story they can help other families in similar situations.
In fact, it was an article that Brian read about medical marijuana stopping a child’s seizures that gave them hope.
Sadie’s seizures had become worse and the medications, many of which produced side effects, including puffiness, were not helping, Brian said.
“To hear there’s no more options is pretty devastating,” said Brian.
That’s when he remembered the article.
Brian and his wife, Damaris, found Centric Wellness in San Diego and took Sadie, then about 8 months, there to see Dr. Mark L. Rabe. The CBD comes from a San Diego-based company called HempMeds and is administered to Sadie through a tube in her stomach. According to HempMeds, unlike marijuana with THC, cannabidiol oil does not produce mind-altering effects.
Ten minutes after giving Sadie her first drops of CBD, Brian said “her eyes were focused on me.” His first thought was, “Is this for real?”
Damaris noticed the changes, too.
“I hold her and she’s looking at me. She holds my finger, doing things that she didn’t do...exactly like a miracle,” said Damaris.
In addition to diminishing the seizures, Brian said the CBD appears to reduce tumors. A tumor that had started on Sadie’s liver was gone after six months on CBD, he said.
With support from her other doctors, Sadie is getting physical therapy and can kind of sit up on her own, and because she is making sounds, she may get speech therapy, said her parents. That’s something they never expected to see when she was 8 months old.
“She’s got quality of life,” said Brian.
Sadie has two sisters: Dina, 5, and Sophia, 3.
They used to think Sadie was sleeping all the time and now they can get her to smile and giggle, said the Higueras.
“For them it’s so amazing,” Damaris said.
A struggle, however, for Brian is finding the right age to explain Sadie’s medication to his older daughters, and the difference between medical and recreational marijuana.
Through it all, Brian noted his mother, Dina Higuera, has been there to help.
On May 4, there will be many family members gathering for the birthday celebration as it will not only be for Sadie but also for her great-grandmother, Candy Barros. The two share the same birthday with 88 years in between.