Dravet Syndrome



Tripp’s seizures began the day of his 6 month vaccinations while he was sleeping. Although his seizure lasted 45 minutes, the doctors assured us that it was a simple febrile seizure. However, nine weeks later we found Tripp face down in his crib unable to move one side of his body. He had suffered a second prolonged seizure resulting in temporary paralysis. His seizures remained long and were more and more frequent. This became the pattern of his very young life.
Tripp tried more than a dozen different drugs… some of which exacerbated his seizures as we learned much later. With no relief through pharmaceuticals, Tripp continued having prolonged seizures as well as an onset of absence seizures. For months, Tripp was seizing every 2-10 seconds all day long. In 2010, he suffered a seizure lasting more than three hours. We knew then that if he survived, it was time for a change.

We went out of state for a third opinion and found an amazing neurologist who immediately started a battery of tests including one for genetic abnormalities. Tripp was diagnosed with the SCN1A mutation associated with Dravet Syndrome. His medications were changed, and he began the Ketogenic Diet. Although the diet helped shorten the length of his prolonged seizures, he was still seizing uncontrollably. Within a few months, Tripp had a VNS implanted. Although his tonic-clonic seizures persisted, the VNS dramatically reduced his absence seizures.

Over these past few years, we have tweaked meds, avoided triggers and practically lived in hospitals and medical office buildings. Although Tripp has had at least some success with each of the therapies he has received, he continues to seize. In 2014 with faith in God and hope in a plant, Tripp moved to Colorado to try medical cannabis. Since Charlotte’s Web would not be available until October, we decided to try THCA. He has been taking THCA for about three months with great results. Although his seizures have been reduced, the greatest benefit from THCA has been his cognitive improvement. His speech and language have dramatically improved, his motor skills are better, and he is happier! We look forward to later this year when we can add Charlotte’s Web to his regime and hopefully get full seizure control.

What would be better than the miraculous effects of this plant? If people throughout the United States in need could have safe access so that more conditions could be treated and that all families could remain together!

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