Cannabis Patient Care - August 2021


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34 cannabis patient care | vol. 2 no. 2 caregiver focus W HEN JARI SUGANO'S daughter, MJ, was di- agnosed with Dravet syndrome at the age of 6 months, she tried to follow a traditional med- icine form of treatment. Through trial and error of countless anti-seizure medications and hyperactivity med- ications, nothing seemed to be working for MJ. She also un- derwent the ketogenic diet twice under the care of a licensed nurse/dietician and received neurology help from children's hospitals in Honolulu, Chicago, and Miami. Jari's last hope was to attempt using cannabis as a medical treatment to try to prevent MJ's seizures. By this time, Jari's daughter was 4 years old (1). Nothing was working and they began to see MJ slipping away from them. Cannabis had to be the right choice mov- ing forward. From other parents with children diagnosed with Dravet syndrome, Jari learned about how cannabis was help- ing them and decided then that cannabis needed to be added to her daughters' regimen. It was not an easy venture digging into the medical canna- bis industry. Jari had to self-teach herself about using canna- bis as a treatment plan for her daughter and what products to use. "When we first started evaluating cannabis as an alter- native treatment for epilepsy, there were no testing labs, dis- pensaries, or educational programs on cannabis. There were few support groups for cannabis patients in Hawaii," she said. "With a background in agriculture, I was able to grow cannabis plants fairly easily. But, I had no way to reliably test the final product. In the early years I used color spectrum test strips for CBD and met a woman who had a thin layer chromatogra- phy machine in her living room. I traveled to Colorado a few times and learned all I could about this medicinal plant. Test- ing made all the difference in providing consistent medication to my daughter." When MJ first began using medical cannabis, the mortali- ty rate of children with Dravet syndrome was extremely high. Many children unfortunately, did not survive past the age of 5. Jari's pursuance of using cannabis as a treatment plan for her daughter was a big risk to take and graciously, it worked. Prior to cannabis, MJ would seize multiple times each day. Jari stat- ed that cannabis provided MJ with relief and when the seizures stopped, her daughter was finally able to heal and recover. "We were pioneers in adding cannabis to MJ's epilepsy regime. Doc- tors were supportive, but many did not receive official training in cannabis dosing and pharmacology, so they couldn't guide us at the time. We followed the research studies conducted by companies such as the producers of Charlotte's Web and watched for drug interactions through blood testing. Cannabis dosing was not conducted at the same time as epilepsy medi- cations to avoid unnecessary drug interactions," Jari added. As her caregiver, Jari needs to monitor MJ under 24/7 super- vision due to her hyperactivity. "From the time she gets up to the time she sleeps, all eyes must be on her to avoid self-inju- ry and harm. Her resiliency is what drives her. Since her daily care requires much time and effort, we only grow a few plants at home. We have the support of other cannabis patients who help us make MJ's oil these days," said Jari. "From using THC/ CBD daily, MJ now uses her oil as a rescue medication." It hasn't always been easy to get the medicinal plant that her daughter needs though. "Access to quality medical can- nabis has always been a challenge in Hawaii since 2000. Dis- pensaries were established to provide patients with access to cannabis, especially those who couldn't grow their own med- icine. However, new laws prohibit patients from exchanging products and limits caregivers' rights," Jari said. Retaining caregiver rights is a very important topic for her. It is something that Jari will continuously advocate for, not just for her daughter but for all cannabis patients as well. In Hawaii, not all patients have the option to grow their own medicine or they can't afford dispensary products that can help them with treating their medical conditions. When MJ first started to use medical cannabis, there was not much legislation supporting it. In 2000, Hawaiian Governor Ben Cayetano signed Act 228 into law which allowed medical Medical Cannabis and Caregiver Rights in Hawaii B Y M A D E L I N E C O L L I

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