This is Tristan and he is one tough little dude! Battling Tuberous Sclerosis Complex (TSC) since infancy, his journey has not been an easy one by any means. TSC is a genetic disorder that causes tumors in many different organs, primarily the brain, eyes, heart, kidney, and lungs. The aspects of the disorder that most strongly impact quality of life are generally associated with the brain: seizures, developmental delay, intellectual disability, and autism.
After witnessing her son have seizure after seizure, Tristan's mother, Deanna began researching alternative treatment options for TSC when she discovered CBD oil. Below is the actual seizure log kept by Deanna to notate Tristan's progress with the new medicine.
These are seizure totals from start date in March to year end.
Starting dose- 4.5mL morning; 4.5mL evening
Began oil March 11, 2016
**First month - March: 5 seizures total
April: 6 seizures
May 11th: 7 seizures
May 14th: 2 seizures
May 15th: 1 seizure
May 18th: 3 seizures
May 19th: 3 seizures
May 20th: 1 seizure
June 24th: 2 seizures
July 8th: 1 seizure
August 6th: 1 seizure
August 24th: 2 seizures
August 25th: 1 seizure
October: 2 seizures
In January 2017, Deanna reduced Tristan’s dosing of Trileptal and Onfi by half and increased CBD oil to 7.5mL in the morning and 7.5mL in the evening.
To date, Tristan averages 1-2 seizures per quarter. Sickness or allergies can increase seizure activity, but he still doesn’t see more than 3 in a month.
His current dosing is 12mL in the morning and 12mL in the evening. Pharmaceutical seizure medications have not been increased since the initial decrease back in January 2017.
Other benefits include his palette is more open to different flavors and textures; increasing his diet from only 5 items to a more complex and nutritionally efficient diet. His ability to be “still” also came with the addition of CBD oil. He used to run in circles and was unable to sit down and be still for any period of time.
Tristan underwent a very complex surgery on August 21, 2018 to remove a tumor from the center of his brain. The procedure lasted over 6 hours, but the doctors were able to successfully remove the entire mass.
Tristan has constant support from his amazing family, and his mother's undying love for her son is displayed here. He teaches us all what true bravery is all about.