seizures

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.
 

Medical Cannabis, Seizures, & Autism: Julian's Story

Julian’s mother, Victoria, didn’t think his condition could get any worse, until one day it did. Rather than inflicting harm on others, he turned to harming himself; a mother’s worst nightmare. It started with hitting himself in the head and kneeing himself in the teeth. Then, in October 2016, Julian was hospitalized after nearly beating himself to death. He was admitted with two black eyes, a fractured skull, and hematomas on his head. The doctors – as many others had done for the entirety of Julian’s life – attributed his actions to a behavioral issue and advised to treat accordingly, but his mother knew that wasn’t the problem.

Julian was certified in the Minnesota Medical Cannabis Program in January 2017 for his seizures (at one point he was having 30-40 per day, many of which were grand mal), but has several other conditions that benefit from his new form of treatment as well. His mother has said, “I really think that if we didn’t get qualified for this that he would really find a way to kill himself. He’s in that much pain.”

Although born without any preexisting conditions, he was later diagnosed on the autism spectrum. Julian developed gastrointestinal issues as a young boy and suffers from neuropathic pain from a back injury that never healed properly. Julian endures Tourette Syndrome-like motor tics and often struggles to control his own body.

With Julian’s limited verbal skills (which he has worked extremely hard for), identifying the direct source of the pain was tricky, but Victoria knew an overwhelming amount stemmed from the region of his head. She could see when a headache came on and his pain levels increased – he winced and looked as though he wanted to crawl out of his own skin, often grabbing at his head, hitting himself, or banging his head into whatever surface was closest. Sometimes, he would lash out at others. It had become clear that Julian did not want to hurt himself or those around him, but he did not have the control of his body to deal with the pain he lives in every day.

After Julian was released from his October 2016 hospital stay, he was put on several different medications and he had a stable month in terms of his aggression and self-harming. The side effects of his medications, though, caused him to sleep all the time and he seemed as though he no longer wanted to live; he was miserable.

In January 2017, Julian was hospitalized once again for the same reasons, and missed out on over a month of school. Once again, the doctors attributed it to behavior. Determined to find relief for her son this time around, Victoria searched for a physician who would certify Julian in the medical cannabis program. On the same day that he was certified, she made an appointment and met with a pharmacist at a LeafLine Labs patient care center.

After his first two doses of Cobalt, Julian’s parents noticed him begin to relax. His seizure activity was low and the severity drastically decreased. He barely hit himself. Within a few days and several more doses of medicine, they continued to see small, yet promising improvements. After a month, they started to see more significant, lasting results. His speech improved and he has started to retrieve words his parents had not heard him speak in months. His need for swaddling decreased and he started to gain more control of his limbs. Julian started to sleep through the night more often. He was successfully weaned off his psych medications, and his mother hopes to be able to wean him off several others, including his seizure medications.

Early in February 2017, he returned to school. “One day I was like, He’s really irritable, he doesn’t feel good. So, I give him a little Tangerine and he’s smiling before he leaves for school,” Victoria remembered, “I checked in and they said that he was having a decent day. We weren’t having any decent days. I think it’s really going to change his life.”

The most extraordinary part is that Julian started to smile again for the first time in over half a year. “I know it’s early on… but this is the first time in a year that I’m seeing him smiling again. He’s reaching out and he’s looking for help, he’s trying to problem solve. He’s trying to keep himself under his weighted blanket or doing whatever he can to keep from hurting himself rather than going and doing it. He didn’t start asking for help until he started the cannabis therapy,” Victoria remarked, “This is not a band aid medication. This is a healing medication. This is not something that is going to have damaging side effects on his liver. It’s not going to cause organ damage and breakdown of his organs. It’s not going to have all these neuro-psychiatric side effects like the psych medicines do. I don’t want him on any of that. It’s not addictive like an opiate. But it’s going to manage his inflammation, his pain. And it’s helping his brain to make connections again. It’s so huge to me.”

When we spoke with Victoria in March of 2017, she told us that Julian’s days consisted of going to school and spending time at home. He required two adults with him to protect him from himself, he wore two helmets and padded braces around his elbows to prevent his arms from bending, and he slept under a weighted blanket each night. “If he can’t bend his arms, he can’t reach up to hit himself in the head,” Victoria said.

As of May 2017, Julian was going every day without wearing his protective gear – helmets and arm guards – or harming himself. He did not need to sleep with a weighted blanket anymore or have two people to hold his arms back throughout the day. He could spend time around his sister, family members, and friends once again. He attended school five days per week. He would flash his million-dollar smile many times each day and laughter was becoming more and more common. He continued to relearn phrases and words he hadn’t spoken in years. His mother and father could tell that Julian was not in the pain that he used to be – they could see it in his eyes, they could tell by the way he moved about their home.

Fast forward to May 2018 and all of the aforementioned still holds true. As his pain levels decrease, his mood and behavior increase. Julian is continuing to learn and grow - he’s thriving. He is talking more and typing to communicate. Through his typing, Julian’s family and loved ones are getting to know him and are seeing more of the bright, funny boy he is. He had an incredible school year and is looking forward to the summer when he can spend time with his family, swim, climb, and run around barefoot.

Medical cannabis has provided hope for Julian and his family that they had once lost sight of. Julian has faced many obstacles along his health care journey, but he is resilient and it is clear there is so much life inside of him. He is curious and enjoys going to school, looking at photos, and watching the History Channel and Wheel of Fortune. When he smiles, he speaks with his eyes and you can feel his joy. Victoria swears that without cannabis, her son would not be here with us today. She describes it as nothing short of a miracle.