Kyla Williams is one of the kids we've been fundraising for during our #420forChange campaign. She suffers from severe epilepsy but has found some relief through medical cannabis. Her grandmother, Elaine, was kind enough to speak with us recently about Kyla and what she's been going through.
What was a typical day like for you and your granddaughter before she started using cannabis?
Kyla was experiencing hundreds of seizures a day, certainly too many to count and receiving a large dose of what is termed as a rescue medication every other day to interrupt the clusters of seizures. This knocked her out and made her sleep at the onset but she soon went back into seizure mode. My daughter was in a constant state of panic and I stood by her helplessly as we watched this beautiful little girl retract from the world and slowly deteriorate.
What sort of support did you/do you receive from the medical community (ie family doctor, neurosurgeon, etc)? Do they support your decision?
At first the response to our questions about the possible use of the Cannabis Oil at Children’s Hospital was that #1 it is illegal in Canada #2 It is not available in Canada and #3 There have been no clinical trials on this so it was not an option for Kyla.
When it became evident she had rejected all possible drug options for her form of Epilepsy, that there were no other drugs and it was clear the Ketogenic Diet was not working for her, Kyla’s own paediatrician got permission from the BC College of Physicians and Surgeons to treat Kyla with medical cannabis. He however, was not able to actually give us a prescription not knowing what specifically we needed and where to get it. That research we did ourselves with his blessing. Kyla’s own neurologist at Children’s Hospital, would not sanction the use but would monitor Kyla’s eegs and care. They would not stand in our way.
What improvements have you seen since she started using cannabis?
Her seizures have dramatically reduced she is interacting and more with our world. Her muscle tone has improved and she continues to thrive. Her last EEG showed none of the erratic brain activity and seizures however she still has abnormal brain activity in her cortical/visual area though slightly improved. Best EEG to date although we know she still has mild seizures.
What have doctors made of these improvements?
They have been amazed at the improvements and continue to want to monitor. They will make no statements of any miracle here but I am sure they will agree that Kyla’s quality of life has greatly improved.
What do they attribute it to? Are they still skeptical?
Her own paediatrician realizes the benefits of the oil and actually is active in suggesting if for other children. Children’s hospital continue to just watch, are supportive in what my daughter does with Kyla but encouraged another pharmaceutical with adverse results so I doubt they really believe in the medical benefits of the oil. They are observing with interest…..Kyla is really one of the first.
Have you been in contact with other families in similar situations to yourself?
Yes I get phone calls on a regular basis about the oil and looking for answers. Many of which I cannot answer, however I believe each of these families eventually turn to the oil out of desperation to try to improve the quality of life for their child. All these kids are unique and special and need assistance. I direct them to learn the way we did and to believe in the oil because once you understand the Endocanabinoid system you will continue to work to finding what is best for your child. Every child is different and I believe the right oil is out there for each one.
What does the future hold for Kyla?
Kyla is a very disabled little girl and it is difficult to say to what stage of development she will reach. She will always struggle as all these kids struggle. We are lucky with Kyla that a seizure will not cause immediate death as they could with Dravet Syndrome. However, I know she is happy and free from pain. She has not had the rescue med for a year coming up now and she is much more interactive. There are no miracles here, it is a roller coaster ride. We are waiting for science to catch up and figure out what is the best oil. We need consistent legal product.