Getting Ducky Back
Recently, I met a parent named John Barclay in Olympia at the state capitol. Over this last legislative session Barclay has been advocating for House Bill 1060, also known as Ducky’s Bill. HB 1060 will help his daughter, who is named River, but her family also knows her as Ducky, to regain a normalcy of life by allowing her to take her medication on school grounds. Her medication, however, is taboo. Ducky has been prescribed medical cannabis by her doctor for her seizures. About three years ago Ducky was diagnosed with generalized epilepsy that has caused her to experience tonic-clonic seizures. Barclay explained that “she also has myoclonic seizures, spatial seizures and partials that are caused by her pharmaceutical medications,” he said “she went from having occasional tonic-clonic seizures to having all types, and more often.”
I asked Barclay to tell me how they found medical cannabis. He told me that about a year and a half ago Ducky was in queue for a synthesized CDB trial at Mary Bridge Children's Health Center. Unfortunately, due to complications Ducky had been removed from this trial. Barclay said that is when the doctor mentioned to them that the CBD (cannabidiol) was derived from medical cannabis. Barclay noted that “we were already aware, but just not ‘there’ yet.” He told me that about a week later they got her medical recommendation. Barclay explains that medical cannabis “not only fights her baseline seizures, but also fights the side effects of the pharmaceuticals.”
Barclay told to me that Ducky would benefit from school in many ways. School would provide Ducky with age appropriate socialization and the educational pathways that should be provided to all of our youth no matter what their disabilities are. Barclay thinks that “medical cannabis is also helping with her cognitive abilities.” He explains that the pharmaceutical drugs really “fogged her mind.” He continues on telling me that the pharmaceutical drugs “stunted her ability to use and or associate thoughts to words.” Barclay thinks that by having her in school it would stimulate her mind. Barclay notes that “constant talking and describing have helped her maintain her understanding.” Medical cannabis has been improving Ducky’s communication skills. Barclay furthers comments that “it used to be silence from her, but since we have amplified her medical cannabis intake she is building on that and now she has almost fifty phrases.”
You would think today in Washington State with all of our progressive cannabis policy on that delivering state qualified medicine to state qualified patients on school grounds would already have been thought of. However, when Barclay contacted the school district about giving Ducky medicine on school grounds and he said that the school board had some concerns about this activity. So Barclay took action to ensure his little girl has full access to her education. Barclay immediately contacted his State Representative Brian Blake to ask for his help in getting a law passed that would fix this oversight. Representative Blake co-sponsored HB 1060 with Representative Jim Walsh. Representative Blake is quoted saying, “I just want the schools to have the tools to deal with this if they get in a situation they get a child that needs this kind of therapy.”
I was curious about how else medical cannabis is helping Ducky. Barclay explained that “it also helped with her weight.” Barclay noted that the “pharmaceutical drugs had caused her to lose weight dramatically. She was 48 inches tall and 40 pounds when she stopped eating. When she could walk she was a walking zombie skeleton.” Barclay said that after detoxing Ducky from the pharmaceutical drugs they used medical cannabis to encourage her hunger. Barclay is happy to report that “Ducky is now 50 inches tall and now weighs 65 pounds.”
When learning about stories like Ducky’s you learn about the many issues that surround pharmaceutical drugs. Barclay told me that the “anti-seizure pharmaceutical caused seizure as side effects.” Barclay explained that “she began on Keppra and it was useless for her seizures. It actually just gave her the “Keppra rage” and she can be randomly violent.” Barclay explains that he has already her off of two other pharmaceutical and that “weaning from those was accelerated and she was having a lot of detox seizures.” Barclay told me that he talks to Ducky’s doctors constantly and that the challenge is to go slow to negate side effect seizures while detoxing young Ducky from the pharmaceutical drugs.
I made a comment that the pharmaceutical drugs must have failed River, and Barclay responded that “they did more than that.” Barclay said that “River was a brilliant child. She was the top of her class. By kindergarten she was bright as bright could be. Today she can't draw a straight line and only recognizes "R" starts her name, much less even try to think about writing it.” Barclay explains that “I lost her because I trusted traditional medication.” Barclay tells me that he knows that the “information, a lot of it, is still in her mind.” He said “I see sparks of it when the brain remaps from the damage of the seizures and pharmaceuticals.” Barclay continues saying that “school knows they can get her back on track.” Barclay finishes with “I am gonna get her back.”
What really impresses me about River’s story is that Barclay is so actively involved in molding the newly overhauled medical cannabis system, so it will work for his little girl. Meanwhile, these efforts will benefit over fifty-seven other medical cannabis children that are on the state’s registry. That is what I appreciate about HB 1060. This bill is about providing these children, ones that have had an unfortunate interruption by disease, safe access to their medicine, which in turn will lead to full access to education along with a more normal life. However, in the process of writing this story the Ducky’s Bill died in the Washington State Senate. The reason we were given was that it had the word marijuana in the bill summary and that turned off a too many politicians. So the plan is to approach the 2018 legislative session with new efforts. If you would like to help us with getting this important bill passed then we ask that you contact your legislative representatives and cast your support for Ducky’s Bill. Together we can all help Barclay get his little Ducky back.