Kyla's story is a story of a life that began like any other child's but soon after, progressed into a roller coaster ride of ups and downs.
Kyla Williams came into this world on February 1, 2012. At the time she appeared to be completely normal. Development progressed to three months of age, when we started noticing upper eye movement. Kyla was a very healthy little girl, however, at four months of age she seemed to be slowing down in development and by six months she was referred to a paediatrician who immediately recognized symptoms of epilepsy.
Kyla was sent to Vancouver Children’s Hospital where many blood tests , EEGs, MRI, cardio test, metabolic tests etc, were performed, drugs were tried and failed, and many doctors analyzed Kyla’s condition. After three weeks in Hospital, the only answer we had was that Kyla has Epilepsy with abnormal brain activity which was causing her cortical visual impairment.
To date, after extensive DNA testing in the USA, there is no known syndrome or disorder for her impairment. No mutated gene was found to show cause. We were told she most likely was having seizures in her sleep since birth. Kyla was released from Children’s Hospital with ACTH steroid injections to be given every second day at our local hospital. She soon had adverse side effects from the steroids so a wean began and the Ketogenic Diet along with three new pharmaceutical drugs were introduced. Relief from the seizures was achieved for about six months, though she was noticeably sleepy and despondent. Seizures reappeared and escalated by Christmas 2013 with no relief from altered medications.
Her seizures were now happening 100 times per day and up to 300, too many to count. We had heard from others about an alternative therapy, a high-CBD low-THC form of medical cannabis, used by many epileptic kids in Colorado. When we asked the team at the Children’s Hospital they said it is illegal, not available in Canada and no clinical trials had been done. We thought we had other options at that point and we went home with more pharmaceutical drugs to try. By this time, Kyla had developed a kidney stone from the drugs and diet. The reality of the situation emerged after another visit to Children’s Hospital. The doctors told us there are no further drug options available and she had a short life expectancy. By February 2014, Kyla had seizures non-stop all day, with the rescue medicine being administered every other day. She was suffering and declining quickly.
Any parent of a child with Intractable Epilepsy knows this story. It is a path to nowhere…as hard as medical teams work to help these kids, all good intentions aside, they cannot control the eventual outcome of rejection of all medications and the Ketogenic Diet. It is the worst case scenario for any parent and probably why the neurologists do not tell you there are so many other children in this situation, with different forms of epilepsy, but going through the same process. It is scary and you are left to feel alone in the fight for your child.
You are not alone!
Why does this happen to these children? They are special little folks who desperately need our help. A child’s development, in many cases like Kyla, is delayed and will never fully recover. Kyla has sight impairment to complicate matters and we realize there is no cure. We are in this together!
It is time to open our minds and investigate medical cannabis. Learn how cannabis with cannabidiol (CBD) works on the Endocannabinoid System in our bodies and in the brain for epilepsy. These children need CBD/cannabidiol in extremely concentrated doses for their brains. Each child is unique and the level of success varies. It is a roller coaster ride to say the least. Some children do not respond to Cannabidiol/CBD but the do to THC/tetrahydrocannabinol or THC-A (the acid form before it becomes psychoactive.
Kyla started on high CBD oil in April 2014 which did not stop the seizures. After a week or two we moved on to higher CBD low THC oil and within the hour her seizures appeared to stop. Since that time, Kyla has only one or two seizures a week. Today, Kyla has been weaned off all pharmaceutical drugs. She take about 130 mg of Charlotte's Web per day increasing the dose with seizure activity. She is non-verbal, not walking or feeding herself but the relief she has from the oil is astounding. She is a happy contented little girl and we continue to hope for her future.
What Works for Kyla
- Relief from seizures are solely from high CBD cannabis oil
- Growing conditions for the cloned hybrid of the hemp plant play a role in the success of the oil
- 3rd party lab testing of the extracted oil helps to ensure consistency
- Vitally important that an epileptic child gets enough sleep
- A regulated diet helps to stabilize their condition
- Find a paediatrician who supports your goal to use cannabidiol as a solution
- Try to take time for yourself. This is a difficult road for any parent and you deserve to have a life
- Never give up – adjustments with oil and dose are a constant challenge