Medical Cannabis, Seizures & Autism: Hiroki's StoryJuly 24, 2018
Hiroki of Cottage Grove, Minnesota, is 8 years old. Cognitively, he has progressed to approximately age 2. His smile can light up even the darkest of rooms. He enjoys spending time with his family and playing with his younger brother, Taiyo. He loves to walk with his parents, grandma or his professional au pair to the mailbox each day. Hiroki becomes giddy with excitement when he knows it’s time; weather permitting, they venture past the mailbox and toward his favorite fence so he can run his hands along it and then take a long walk around the neighborhood.
At the time of his diagnosis at 1 years old, Hiroki was 1 of 600 in the world known to have Phelan-McDermid syndrome (PMS), a rare genetic condition commonly characterized by intellectual disability of varying degrees, delayed or absent speech, low muscle tone, seizures, and motor delays.
Around age 3, Hiroki was diagnosed with epilepsy and autism spectrum disorder, which are both common characteristics of PMS. He also has a number of other conditions such as asthma, dysphagia, autoimmune dysfunction, and hip dysplasia.
Misa and Dan, Hiroki’s parents, characterize their lives as “Before” (Before Medical Cannabis) and “After: (After Medical Cannabis) because of the stability medical cannabis has brought to the family. Before medical cannabis, most of their family’s days were stressful, repetitive and rushed. Unable to stay at home because of Hiroki’s anxiety and need to be “out and about,” they would be out the door by 8:30 am and back by noon for Hiroki’s nap. And then, they’d be out the door again by 3 pm and home around 7 pm. On every outing, Hiroki would get upset and cry if they took a left rather than a right. Hiroki himself was stressed and anxious, and he would have a hard time sleeping at night.
Before Hiroki’s seizures were controlled with the help of medical cannabis, Misa and Dan became unofficial detectives and nurses. Hiroki is nonverbal and does not sweat, which is characteristic of children with his diagnosis and makes it difficult to determine how he is feeling. For most of his life, Hiroki’s parents have lived in fear. “It’s like we play detective,” Misa explained of his seizures, “We’re always trying to figure out when the next big one is coming.”
Every 2 weeks to 2 months, Hiroki would experience grand mal seizures so critical that he would often stop breathing. His last seizure was so severe that it left him unconscious for more than 30 hours. At one point in time, Hiroki was being seen by 22 specialists and taking up to 8 different medications per day. His parents were determined to find a more holistic tool for them to help treat symptoms of his diagnoses.
Since starting medical cannabis (the “After”) 3 years ago, so many doors have been opened for Hiroki. He has not had a single grand mal seizure since. Although he still becomes anxious with changes to his routine, his cognitive speed and functioning have increased and his ability to cope with daily changes has improved significantly. He is more aware and present, and he’s beginning to show more interest in interacting with family and peers. He can spend time comfortably at home, school assignments and walk on the treadmill. “Team Hiroki” has been able to teach him how to use his iPad to communicate simple sentences like “I want to eat PB&J”--one of his favorite snacks. Misa and Dan are grateful for the simplest of “typical” family routines: eating a family meal together at home, playing games as a family, and dancing together in the living room. Within the community, he can go to horse therapy in the summer, adaptive snow ski in the winter and family golf outings. Visits to the pharmacy and the number of prescriptions he takes have drastically declined, which his parents are ecstatic about. He now actively sees only three specialists and is taking 2 medications.
Misa and Dan feel like he is making cognitive gains each day and they have been able to potty train him to some degree, which is extremely rare for children with his condition.
Hiroki can now scoot down the stairs after waking for the morning or from his afternoon nap. He can also drink from his sippy cup, a new freedom for Hiroki that he has never experienced before.
His mother believes Hiroki’s, as well as the entire family’s, quality of life has gone from a 1 to a 10 since he began medical cannabis. “There is nothing that has changed our lives more significantly than the availability of medical [cannabis],” she shared.