Autism

Medical Cannabis, Seizures & Autism: Hiroki's Story

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.

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Medical Cannabis, Seizures, Autism & Intractable Pain: Lucas's Story

Lucas of Lakeville, Minnesota, is in many ways your typical 18-year-old boy. He loves girls, Will Ferrell movies, and sports--baseball is his favorite. He also loves some good potty humor, Elmo, and spending time with his big sister.

At age 3, Lucas was diagnosed on the autism spectrum and with cerebral palsy. Around the same age, his parents were told that he also suffered from seizures.

In addition to the seizures, Lucas would often inflict harm on himself or others. He was anxious, restless and would often struggle to get restful sleep. Some of Lucas’s behavioral tendencies has made it hard for his family to spend time out in their community. “Autism is our life,” his mother explained. Lucas and his family have spent many days at home watching TV.

To help manage symptoms and the progression of his diagnoses, Lucas was prescribed a number of different medications. Unfortunately, most of those medications came with side effects that required even more medications to manage them, adding to an already lengthy list of prescriptions. Nearly two years ago, Lucas’s cholesterol and triglyceride levels were so high that his doctor prescribed him Fenofibrate, a common drug for his condition but uncommon for someone so young.

After they had exhausted what seemed like every treatment option, Lucas’s physician recommended enrolling in the medical cannabis program in Minnesota. Interested in lowering the number of prescription medications he was taking and finding a more natural treatment option, his parents were immediately interested.

Since Lucas was young, Olivia had researched and kept in mind the possibility of medical cannabis as an alternative for him, but for years it wasn’t legal and she still had her hesitations once the program started in 2015. After Lucas’s physician certified his condition and they enrolled through the Minnesota Department of Health, it took nearly a month for his parents to decide to make an appointment at LeafLine Labs.

Now, Lucas experiences relief from pain and seizures without the long lists of side effects that prescription medications left him with; they have been able to wean him off most of his pharmaceuticals.

Lucas is mostly nonverbal and prefers not to be touched most of the time, but one of the words he uses frequently is cream. When he experiences pain from scoliosis, for which he is undergoing a spinal fusion surgery in mid-July, he will ask for his cream and stand perfectly still while one of his parents rubs the Heather Topical Gel Cream on his back. “It’s pretty incredible,” his mother remarked.

“As soon as the cannabis was given to him, the hitting of himself stopped. The violent outbursts with us stopped. It was like night and day,” Olivia shared. “I was really expecting him to start speaking and, you know, write his own name and all of these other miracles. I know they will happen someday, though. Just the fact that he stopped hurting himself was enough.”

Olivia describes Lucas as being more self-aware. “I feel like he’s in our world more than he used to be,” she said.

Lucas is thriving in his autism program at school and he is expected to graduate when he turns 21. He can sit in class, focus and not get distracted by what’s going on around him. His parents feel as though he’s learning and making cognitive gains more so than ever before and they haven’t noticed any seizures since he began taking medical cannabis.

He is more interested in participating in the world around him. The other day, his face lit up when his sister entered the room, his mother shared, whereas before he may not have even noticed.

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This past February, Lucas attended his second Night to Shine prom night experience, an event sponsored by the Tim Tebow Foundation for people with special needs age 14 and older. In contrast to his first time prior to medical cannabis, this last prom was a night-and-day difference. He wore his first tuxedo, he participated in activities and interacted with his peers, and he seemed more focused. “He really seemed to enjoy himself,” Olivia shared.

Lucas’s parents are amazed every day by the improvements in health, mood and behavior they’ve seen in their son, and they are eager to witness even more progress once he begins to heal from his spinal fusion surgery in July.

Looking back to the beginning of Lucas’s journey with medical cannabis, Olivia’s only regret is not making an appointment immediately. “It could have been one more month that he had this medicine,” she said.