Katie is a happy, loving, 10-yr.-old girl. She had her first status epilepticus seizure the night of her 6 month immunizations, and a second one the following day. We had no idea what was going on or that seizures could be life-threatening. Though specialists assured us Katie would outgrow her seizures, she went on to have thousands more. She has tried and failed 22 pharmaceutical medications, in many combinations. We found some medications would increase her seizure activity to hundreds per day. After an MRI and intracranial EEG in June 2011, her right occipital and part of her parietal lobe were removed due to malformed brain tissue. This resulted in blindness in the left half of both eyes, but no seizure relief. In November 2011 she had a VNS implanted. It was during this time that Katie’s genetic testing came back positive for Dravet Syndrome. Katie currently takes 5 pharmaceutical medications, with numerous harmful side effects. We have to sign paperwork at her epileptologist’s office stating that we understand she’s on more than an adult dosage of some medications and her organs may shut down at any time. How’s that for a side effect?
In May 2015 we gave Katie Charlotte’s Web Hemp Oil for the first time. We continue to gradually increase her dose to get her to a therapeutic level, but already the results have been amazing. Since the very first dose of CBD oil, Katie has slept thru the night every single night. Prior to the oil, she suffered insomnia at least 5 nights a week. Her bowel movements are normal, after years of daily constipation. We have been able to successfully reduce her Onfi dose by 25% with no increased seizures. Her seizure activity is down over 50%. Our friends and family are amazed at the changes is Katie. She is demonstrating improved verbal skills and response time, increased facial expressions, and a wit and humor that we’ve never seen. She loves art, and her ability to draw has increased dramatically. We feel like we are getting to see who are daughter is for the first time in her life, and we are so thankful. There have been no negative side effects.
This is the first time in many years that we have had HOPE for an improved quality of life for our daughter. We would love for you to follow Katie’s progress on her fb page, OK for Katie.