After seeing some great results up through day 6, we have since lost much of seizure control we originally observed. This may be due to many factors including not zeroing in on the right dosing levels or Wyatt’s metabolism, etc. (He also lost some of the positive side-effects like sleep. He was up for two hours ready to hang out and play between 2:30 and 4:30 a.m.!)
However, we still have lots of things to try and dosing tweaks we can do while we are here. We know there is still potential for cannabis to work since we saw evidence that it can reduce his seizures. Today we started cohort B (a different set of plant profiles that have evidence for treating epilepsy) at the dose that seemed to be most effective with cohort A. He is two doses in. I’ll be reporting on results in the next few days. Pray for improvement, sustainable improvement.
This tinkering with plant profiles and dosing reminds me very much of the Keto diet. (Which, if you know my experience with Keto or have administered it, it is A LOT of work.) What I like about Keto, is what I like about cannabis. There are lots of options and the ability to customize based on the patient.
I am really glad there are lots of cannabis options to trial in Oregon because different people respond to different combinations of cannabinoids.
#meetcannabis #wholeplant #hopeful
Wyatt just completed Day 6 of his cannabis trial. We are seeing about a 70 percent reduction in his seizures! That is unprecedented for Wyatt. Since his diagnosis, we haven’t seen results like that with anything else we have tried. There are some side effects. He is sleeping soundly at night and taking two short naps during the day. He is also hungrier than normal in the morning. (When he is hungry or tired he is crabby, so we are trying to work out the kinks of our new schedule with his restricted Ketogenic diet.)
On the spectrum of side-effects that Wyatt has been exposed to (like vision loss, immune-system suppression, liver damage and death) or experienced (insomnia, loss of coordination, sedation, anger, etc.) these are very reasonable (the solid sleep for him at night is very welcome!)
We are cautiously optimistic that we’ll be able to maintain these results and continue to improve on them over the next few weeks.
Then we’ll have to figure out what to do next …
Timing is everything. Isn’t that a truism? It is definitely applies to Wyatt and cannabis.
The time it takes to metabolize food or medicine is unique to each individual but typically falls into an average range for most people. Wyatt’s cannabis begins to take a therapeutic effect after about 20 minutes. (A lot of other medicines taken orally fall into this range, too. That’s why it takes a while to experience pain relief from aspirin after you swallow it.)
That effect will last about three hours. To maintain a therapeutic level in his body, he must receive a small dose every three hours. Day and night. (Since we are using a plant extract, handy time-release mechanisms in many pharmaceuticals aren’t available.)
What is his medicine like?
It is an amber liquid because the cannabinoids have been extracted from plants and diluted with coconut oil.
It is in a mason jar because it is strong and inexpensive (coconut oil is slippery!) Glass also keeps the cannabinoids from sticking to the vessel.
It smells like an organic, heady plant.
I haven’t tasted it, since I don’t have a card.
Wyatt takes it with his food or using a standard medicine syringe. Easy.
Wyatt had his first doses of the first cohort of cannabis plant profiles on Sunday. And guess what happened? Nothing. Frogs didn’t fall from the sky. The fourth horseman of the apocalypse didn’t arrive at our door. It wasn’t all sunshine and rainbows either. It wasn’t magical. It was just like any other day when he tried a new medicine. He just took his first dose of medicine with his lunch and then took his afternoon nap.
Subsequently, he has been taking very small doses throughout the day and night to see if we can zero in on both the minimum amount needed to control his seizures and the right frequency based on his metabolism.
Basically, we are using the scientific method – just like every medicine we have used to treat his epilepsy. We are treating him with doses that are very small and adjusting up (or down) – still within a very small, low-dose range. This is the same method we have used with other pharmaceuticals – start small, watch for changes and if we find a dose that works, stay there. We just haven’t found a dose that works with other medications.
We are closely observing him for any changes in behaviors and changes in seizures. We are documenting things in great detail, but for purposes of this blog, we are seeing some positive effects.
Yesterday he only had four very short clusters, which is about half his baseline number. He was also very sleepy. We would obviously like him to be more awake, but we’ll take a day with fewer seizures as a good start. We still have lots of options to try so we’ll just follow the process and see what happens.
Science is a great thing. Cannabis isn’t magic. It is medicine.
More than 3,000 plants are used to make medicines that are used everyday including aspirin, digitalis, quinine, atropine and more. Why not marijuana?
If you strip away all the political rhetoric and fear, marijuana (or cannabis if you prefer the scientific name, which I do) is just a medicinal plant. A plant that happens to contain hundreds of chemical compounds called cannabinoids. These cannabinoids interact with three main body systems – neurological (CB1 receptors), immune (CB2 receptors) and tertiary. Each strain of plant has a unique cannabinoid profile. This profile is not only determined by the plant’s genetics but also by the way it is cultivated – from the ambient temperature to the soil pH. The best way to grow plants with reproducible profiles is to grow them indoors.
So what does this mean for Wyatt? Well, it means that there are a lot of options to sort through to match the right cannabinoid profile(s) to stopping or reducing his seizures. These profiles must be grown consistently by responsible growers who adhere to high standards for consistency and quality.
The good news is that the company we are working with, MxBiotech, has the MxResearch program. They take the time to identify and certify growers to their high expectations for quality. Once they understand the chemical make-up of the cannabinoid profiles, they work with patients to understand cause and effect. They have worked through this rigorous process with thousands of patients and are taking what they have learned to narrow down the field of profiles for Wyatt to try. He’ll try them in cohorts of 5 or 6 profiles at very low doses to see if there is a significant reduction (over 80%) in his seizures. The goal is always to use the minimum dose that will produce the maximum beneficial effect. This logical method allows us to speed up the process of elimination to determine which cannabinoid profile will provide the maximum benefit for Wyatt.
The team is very thorough and committed to educating patients and parents so they understand that, if we use a plant as medicine, we have to understand it in the framework and the reality of medicine. I greatly appreciate this level of education – even though I am anxious to get started. As you know it is not everyday that you get to talk directly to the people making your medicine. We usually get it much further down the supply chain.
We have spent more than five hours learning about the program and how cannabinoids work. This is far more guidance than I have received for any other pharmaceutical that we have tried for him (with the exception of the injectable steroids.) I have learned far more than I can share in a blog entry, but now I feel much more confident and equipped to do a medicinal cannabis trial with Wyatt. We’ll meet cannabis and start the trial in the next day or two. Stay tuned!
As I was packing everything up, making Wyatt’s keto food, printing boarding passes, you know, all the mundane things you do before a big trip, I was filled with such a feeling of anticipation. But a feeling that was more than anticipation, like excitement, fear of the unknown, joy, love, gratitude all rolled into one. The last time I felt that way was was the night before Wyatt was born. His C-Section was scheduled so we knew that at 8:30 the next morning our lives would change forever and our family would finally meet our little Wyatt.
Our trip has gone smoothly so far.
We made it through airport security with Wyatt’s Keto food, stroller and car seat. Even made it to the gate on time. Wyatt yelled a lot on the plane but he won people over anyway. A very nice flight attendant even came over and asked if she could play with him in the galley. He obliged and impressed the ladies with his good looks and brute strength. Then he pulled the hair of the lady in front of us … he is good but not perfect.
After we arrived in Portland we brought Wyatt to the clinic to be evaluated for the Oregon Medical Marijuana Program. The appointment was in a clinic in the Pearl district. The doctor was very nice. It was a little different than a typical clinic experience in that the waiting room music had a little more classic rock than Mayo. Not a bad thing since Mayo only plays elevator music.
We then filed all the paperwork and mailed it to the state. Wyatt is now legally able to participate in Oregon’s program.
We won’t be starting him on the medicine until next week. We chose to work with a biotech start-up firm to help us navigate the science of medical cannabis. The first thing they will do is meet with us today to orient us to their research-based approach. We are anxious to start, but appreciate this step where they will take the time to get to know Wyatt and his individual medical needs and educate me on the potential of cannabis. We often hear about THC and CBD but there are more than 60 cannabinoids that could have medical applications. More to come as I learn more …
This trip will be hard as we will miss Jeremy and EJ like crazy, but we will make the best of it. Oregon is a beautiful state and the people we have met here have been very kind. We are looking forward to going on lots of road trips and exploring the Pacific Northwest.
Portland Alternative Clinic