Our daughter experienced her first generalized tonic seizure at five months old. A subsequent status seizure two weeks later resulted in a life flight from our local hospital to pediatric ICU 60 miles away. Driving silently below the helicopter’s path, my husband and I prayed she would be with us when we arrived to meet her. We arrived to find our beautiful 10-pound baby girl hooked up to more life support than we had ever seen. Thankfully, she recovered and was sent home with us five days later, but the challenges were just beginning. Our life became consumed by generalized tonic-clonic seizures which often progressed into status seizures requiring emergency room intervention. Despite the heroics of multiple pediatric neurologists and specialty physicians, standard anticonvulsant treatments continued to fail, and months turned into years.
During the first 10 years of life, we attempted several combinations of standard anti-epileptic drugs including Phenobarbitol, Tegretol, Depakote, Klonopin, Lamictal, Gabapentin, Diazepam, Felbamate, Topiramate ,Phenytoin, Acetazolamide, and Vimpat. We spent two years on the ketogenic diet, which unfortunately caused major organ distress and required immediate cessation. At 11years of age, we agreed to neurosurgery to place a Vagus Nerve Stimulator in hopes of controlling our daughter’s seizures. She still endured terrible seizures, however, all status epilepticus stopped.
At twenty years old, still searching for answers, a change in neurologists brought a break-through in our daughter’s story. After twenty years of specialists hypothesizing about the underlying cause of her condition, our angel was finally diagnosed with Dravet Syndrome. Although the diagnosis is tragic, having her genetically confirmed as a complete deletion of the SCN1-A gene was a new starting point. This diagnosis explained why much of the standard medical protocol that had been attempted in the early years of her life failed to improve her quality of life. Her body had endured years of anticonvulsant use, many which are contraindicated for Dravet patients. After the diagnosis, we also tried trials of Fresium and Stiripentol from Europe that had worked for other Dravet patients, but neither improved seizure control.
One of the most amazing parts of the diagnosis was that it gave us access to other Dravet families and a community of people who shared many similar experiences. At a Dravet conference, we were first exposed to the concept of medicinal cannabis to control seizures.
As a family, we were well versed in researching medical interventions to alleviate seizures. With due diligence, we reviewed the scientific data, quality of life impact, and of course efficacy in similar patient populations. Based on the new information coming from parents with Dravet children, we researched cannabis and the endocannabinoid system. After consulting with our neurologist, we moved cautiously forward with the plan to trial CBD. The first step was to find access to controlled medical cannabis that we could trust. Our standard of care required that we find cannabis grown organically, without pesticides, with a high CBD, low THC ratio, and equally important, that would be a consistent source without fear of interruption in availability.
After an amazing Dravet mom in California shared her daughter’s success on a grape seed-based CBD oil, we finally felt ready to start the trial. The Elysium oil was processed using C02 extraction and met all our criteria. What happened over the next four months was very promising. Our first four months of CBD reveled a 35% reduction in seizures, a slight increase in verbalization and clarity. There were no noticeable negatives in behavior, cognition or health. After consulting with our neurologist, we proceeded with an extremely slow wean of klonopin and thus far, experienced only minor weaning symptoms. Other improvements included a slight decrease in weight and an apparent decrease in inflammation. In addition, she had an improved sleep pattern (10-12 hours per night) and her afternoon napping has disappeared (which was a prime time for seizure activity). All in all, we felt very positive and began enjoying some multiple word sentences and a spring in her step that was noticeable by all.
Encouraged by the positive experience we had, we were excited when another oil closer to home became available. It was a different processing approach and a different plant, but it would be much more convenient and less expensive. We kept her CBD dosing the same, made the switch and hoped for an easy transition. Unfortunately, for our angel, the change in oil resulted in her seizure count increasing higher than before we had started our first CBD trial. Her mood and perseveration became more intense. Our typically rather happy daughter became a little gray cloud and she was resistant to taking the oil. Alas, after two months of trying the oil closer to home, we decided that despite the ease of access, we could not continue with this oil. For us, it was like having the pharmacist fill one of her long-standing anticonvulsants with a generic… the wheels just came off the bus.
We have been back on Elysium Oil for just over a year now. Our seizure count remains fairly predictable and we are elated to share that we have reduced one of Jessica’s long-standing benzodiazepines (Klonopin) by over 75% of her original dosing and continue to titrate down cautiously once a month. The other gains in language, clarity, and mood have all reappeared and we are forever grateful for the knowledge we attained. We now know that not all oils will work for a given patient. It is imperative for families of fragile patients, to understand the differences among plants, processing techniques, growing methods and to integrate that knowledge in meeting the particular needs of their child. We feel blessed that the first oil we tried was the right one for her. Had we started with the second oil, we may have discounted the entire medicinal cannabis approach and therefore, never experienced the improvements we are now witnessing. Medicinal cannabis is bringing hope to our family and we have hopes of lowering some of the pharmaceuticals that pose such risk to our daughter’s organs and overall quality of life. We are working with our doctor to find optimal seizure control and minimal drug side effects.
We are grateful to those who went before us for sharing their knowledge in using medicinal cannabis for epilepsy. We are indebted to those who walk beside us for their courage and support, and to those of you who will follow this path; we wish you strength, perseverance, and discernment in finding the best treatment for your angels. With love, prayers and best wishes, TeamAngel:-)