House Bill 105, or Charlee’s Law, is named after 6-year-old Charlee Nelson. Charlee suffered seizures for years due to Batten disease and died right after the legislation in Utah passed. Cannabis oil could have improved her quality of life by reducing seizures.
While the benefits of cannabis oil are yet to be scientifically verified, Primary Children’s Hospital in Salt Lake City will undertake a study on the effects of it in children with seizure disorders. There are now 180 children in Colorado taking the oil and kids in 19 other states where medical marijuana is legal are using similar oils made from other cannabis strains. Cannabis oil is extracted from a strain of medical marijuana called Charlotte’s Web, which does not induce the psychoactive high associated with recreational marijuana use. The children don’t smoke it; they ingest a small quantity of the oil with food. Anecdotal evidence suggests that the oil can help ease or eliminate seizures in children where other treatments have failed.
Parents with epileptic kids, including Neon Trees bass guitarist Brandon Campbell and his wife Emilie, are thrilled to have cannabis oil available as an option for treatment. I met Emilie this summer and got to know a little bit about her seven-year-old son, Connor, who suffers from seizures. She had recently met with Governor Herbert and other Utah legislators and encouraged them to vote for the bill by putting a face to the cause and sharing Connor’s story. Needless to say, she was ecstatic when the bill passed and is optimistic that the new treatment could help her son.
When Connor was a baby, physicians struggled to diagnose him, placing him on the autism spectrum. But Emilie felt that there was something going on in addition to Connor’s autism, and the doctors soon discovered he was having tonic-clonic (what used to be called “grand mal”) seizures. In the last few years, the frequency of Connor’s seizures has increased. When children’s brains and bodies are continually interrupted by seizures, they can’t develop normally. My husband suffers from a seizure disorder that started when he was a teenager and is controllable through medicine. I told Emilie this and she shared some of the hopelessness of her situation because doctors have tried these common seizure medications and they haven’t worked for Connor.
Emilie’s Instagram and Twitter feeds gave me another peek into her life with her beautiful son. Connor wakes up around 10 times a night with seizures. I keep thinking about this tweet:
I have a daughter the same age as Connor. She is my youngest, and for all the challenges that come along with parenting school-aged children, there is nothing like the bone-aching, soul-sucking fatigue of parenting a child (usually an infant) who does not sleep through the night. To be out of that phase when your child gets to be around four or five is truly something to rejoice over. To enter back into it, as Emilie has with Connor, because of a health concern like tonic-clonic seizures would be so hard.
Of course that’s only part of the difficulty parents of children with epilepsy face, but it resonated so strongly with me. Fortunately parents in Utah now have the law on their side with this new cannabis oil treatment. However, there are still other logistics to work out. For example, families would love to have cannabis oil mailed directly to them instead of having to drive to Colorado for it. Classifying the drug as “hemp” instead of “marijuana” will make a big difference.
Similar legislation to make cannabis oil available for seizure treatment recently failed in Georgia. Utah is the first state to pass a bill like Charlee’s Law. The treatment looks promising, especially to desperate parents who are low on hope. Reducing seizures by even a fraction would mean so much to parents of children with epilepsy. In fact, one mother said that even a fractional reduction “… would be a miracle to us.” Here’s to hoping this oil turns into many miracles.
Follow Emilie on Twitter.
Photo Credit: Emilie Campbell via InstagramMore On