UPDATE: Roberts Progress. 06/30/2020
A lot has happened on our journey the last few years and I would like to share our journey with you in hopes to help other parents, like myself, gain more knowledge as we continue to take care of our loved ones. I continuously read stories of others’ success to reiterate the powerful healing I know is happening in my son’s body. My son Robert is nonverbal so knowing exactly how he feels is a guessing game. One this mom has gotten good at!
I’m excited to report that we now have a tincture made after the exact one I give my son, called Robert’s Remedy. It took me years of trial and error to find the right CBD and the right terpenes that worked best for Robert and I am happy to be able to share that with others. I truly hope it can help enhance your quality of life, like it has my son’s life. Today Robert is going weeks without any seizures not just days, WEEKS! I’m looking forward to the month mark because it’s coming too, and let me tell you, Robert without seizures is one happy and active guy. He feels good and it shows!
This is an article about Robert and his story from Weed Magazine published in 2018:
“If you would have told me 5 years ago I would be advocating for medical cannabis, I would have laughed at you.”
“That was before the doctors at UCSF (University of California, San Francisco) Medical Care wanted to cut my sons brain in half to try and control the seizures.” Robert, Shelley’s oldest son, was born perfectly healthy. Within 24 hours of his first immunizations, he had a stroke. He was diagnosed with spinal meningitis shortly after.
The stroke caused severe brain damage, drug resistant seizures, profound deafness and cerebral palsy on the left side of Robert’s brain. For the last 27 years, he has been on every medication they make to control seizures. When a new medication was made, the doctors tried it on Robert. As he got older the toll the medications were taking on his ability to participate in day to day activities was more noticeable. His health was declining and being over taxed by all the medications.
Shelley worked three jobs and went through school at night. She’s a bookkeeper, which is thankfully something that can be done mainly from home. But taking care of Robert is still a full-time job. With this in mind, when her youngest graduated they moved closer to Robert’s grandparents. It was that same year his seizures became out of control and with daily recurrence. That was a horrible time for the family and everything seemed lost. Nothing they tried seemed to help Robert. That’s when Shelley came across something remarkable.
Robert’s mother saw the CNN documentary “WEED”. This is a video report where Dr. Sanjay Gupta the neurosurgeon, talks about CBD and how it controls seizures.
“Really, marijuana? I figured it to be another scam” stated Shelley.
During Robert’s next appointment at UCSF his mother asked the neurologist about cannabis. The doctor went on, explaining that the tests were having great results in their pediatrics department. She recommended it to Robert. “Wow, what a wave of emotion I felt then. Could it be possible that there was something out there to help my son other than brain surgery?”
You can imagine as a parent how Shelley felt. They wanted to cut her son’s brain in half. It was hard seeing Robert suffer every day. She felt hopeless.
At that moment, the Trotter family’s cannabis journey began. They were very little informed about marijuana and its medicinal properties. They had to first make sure they understood the plant before giving it to Robert. Shelley started going to dispensaries 5 years ago. At that time, CBD was so new that little was known about it in professional locations. It was the blind leading the blind, the data just wasn’t there yet. Robert’s mother took it to the Internet and found a CBD conference down in southern California. She packed up the family and went for a ride.
“There were so many families there just looking for some shred of hope just like we were. Young kids, babies, young adults like Robert, looking for a better quality of life. Two families and one doctor spoke that day and I can’t even begin to tell you the hope that filled that room. Hope that everyone in that room now had because of the success of just a few families.”
Today, Robert goes 4-5 days with no seizures. The family is working on getting Robert off the terrible pharmaceuticals that hurt his body and mind every day. It won’t be easy as many of these medications lead to dependency and give horrible withdrawal symptoms. He is still on 3 medications. They started reducing his doses and the family is down to 600mg from 3600mg previously given to him. The family soon wants to get him off the pharmaceuticals and just have him medicated with CBD.
CBD is not cheap and the family now grows commercial cannabis to offset the costs. But all this CBD is still 6% of the monthly cost of the pharma medication.
“We played catch for 30 minutes the other day, he laughed for the first time in years. Things that may seem normal to you were happening for the first time in Roberts life, all because of cannabis. I am so hopeful for his future now. I know he will live a long and happy life.”
None of this is easy on a family. Robert’s parents got separated early on. “When one person has epilepsy, the whole family has it.” It has just been Shelley and the boys ever since. Cannabis is a hard thing to parent and educate about in a situation like this. Luckily, all of Shelley’s children were already adults when their cannabis journey began. This made it so that they were already mature enough to understand cannabis as a medication.
Today, Shelley’s youngest, Micheal, is a commercial grower in Calaveras County. He has his own company, “Wind Valley Gardens” where he gets the opportunity to grow his brother’s medication. “Seeing what an impact cannabis has had on his brother, I believe is what drives Micheal to want to help others. He has such a compassion for others. I truly believe we are on the right path and I’m so very proud of my boys.”
“We first started growing a few plants in our backyard. When we started this journey the CBD products at any store were non-existent or extremely expensive and lacked consistency, hence why we grew our own. It was a learning curve for sure. We grew both CBD and THC.”
In 2016, they grew the hybrid “AC/DC” with a tested CBD to THC ratio of 18:1.
In 2018 they are growing Susie Q, with a ratio of 59:1, yet, still not tested.
After the first harvest was when the family discovered the most about cannabis. Learning how to make oil is not an easy process. But this gave the family more and more confidence to try out different products and compositions. Shelley learned how to make a pain relief for Robert. This might not go far in terms of recovery, but it sure helps her son live a better life. “He has cerebral palsy on the left side and his left side is constricted and contorted. I knew he needed some kind of relief. It worked. He uses that left arm way more than he ever did.”
There is not enough research to conclude anything about how cannabis will change Robert’s health yet. But the fact that it already brought a smile into his face should be enough to move things further. It’s with stories like these that the world will come to see the truth about medical cannabis. It is so much more than a plant and your job as a consumer or simply a supporter is to spread the positive message. Make your voice be heard so that more people like Robert can be helped.