I am the mother of a child diagnosed with intractable epilepsy, meaning "unable to be controlled". Ruby's epilepsy is also idiopathic, meaning "no known cause". After failing 5 pharmaceutical drugs, including Epidiolex, the CBD pharmaceutical currently awaiting FDA approval, it was suggested she may need a vagus nerve implant. And then if that didn't work we would discuss surgery options. The inability to control the seizures with drugs led the neurologist to believe her condition was degenerative and prognosis was a increase in seizures and decline in health.
I was scared, worried, and wanted nothing more than to stop these convulsions, But part of me did not believe it. It did not make sense. I felt, and expressed, that each new drug introduced was actually making her seizures worse. More frequent and stronger. From a clinical perspective I was assured this was the disease progressing. The side effects of the pharmaceuticals left Ruby tired, void of energy, and when I asked her how she felt she made a claw with her hand, scrunched up her face, and made a growling sound.
Against the advice of the neurologist and team of specialists, warning that weaning from medications may induce status seizures and a reminder about the real possibility of SUDEP (SIDS for epilepsy), I decided to forgo the VNS and began the slow process of weaning Ruby from her medications.
Two weeks after I made this decision, the results from her genetics test came in. There was no genetic disposition toward any syndrome or disease. However, there were several mutations in her P450 cytochrome system which are responsible for, among other processes, metabolizing drugs. In particular anti-epileptic drugs and CBD. Her body not only was unable to use the drugs as expected, but they had been essentially poisoning her the entire time. For me it was finally something that made sense. The medical community agreed this was a possible explanation, but wanted to try other pharmaceuticals that, supposedly, do not use this pathway. After my own research I concluded there is not enough known about how these drugs are metabolized, and although some drugs are processed in different systems, there is still some processing in the liver and continued with the plan.
It was nice to have the validation, but I had already determined the course of action. We moved to Oregon to have access to whole plant cannabis and the freedom to grow and make our own medicine. In addition, we have healed Ruby's gut, implemented chiropractic health, and introduced a very small dose of whole plant cannabis administered under the tongue (sublingual). (See Dosing in Cannabis Concepts for more info)
Ruby's seizures are not gone. She still has them nightly but far less frequent and much less intense. Mostly she has one seizure. Occasionally there are 2 and sometimes none. It ebbs and flows. She may outgrow them one day. There is no formal research on non-medicated epilepsy. Medication is always prescribed. However, there are many children in this generation being treated alternatively for a variety of reasons. They will be the first statistics for this movement. In addition to seizures, I believe cannabis oil is helping with ADHD , Sensory Processing (SPD), and whatever else is going on in there!
With the information I have gathered, and years of experimenting with different methods of making oil, I decided to put it altogether in a clear and concise 42 page guide. See "book" for more info on Cannabis Concepts. The video library has videos from many years ago that show how to make your own medicine. Mini Canna Lab Is a wonderful home test kit that allows you to test your own flower and oils. This testing was invaluable in making sure my plants and oils were the correct cannabinoid profile and potency for my child.
I will repeat often--find what makes sense to you and for you.