TAHOE/TRUCKEE, Calif. — Five-year-old Julian Gaube is a happy, cute kid with a big, big smile, who attends Tahoe Lake Elementary School in Tahoe City. The young Kings Beach resident suffers from cerebral palsy and Lennox-Gastaut Syndrome, a rare form of epilepsy that is difficult to treat.
“The journey to control his seizures has been difficult and on-going,” said his mother, Kara Fox. “He has been on many different types of seizure medications, undergone hospitalizations, had various alternative healing treatments, and has been on a course of steroid treatment.”
Ever since Julian’s cerebral palsy diagnosis at 6 months, his parents Kara and Dan Gaube have done everything they could to promote his development, including physical therapy, Reiki energy work, traveling to out-of-town medical appointments, to name a few.
Now, daily, multiple seizures — severe enough to be life-threatening — are improving through the use of cannabinoids, or CBDs. They are found in a certain strain of marijuana that is low in TCH and high in CBDs. Kara, a journalist and former professor at Sierra Nevada College, is used to research. After months of poring through materials, the family decided to try the alternative CBD treatment, in the hope that one day Julian will be seizure-free.
On Aug. 12, Julian began ingesting CBDs orally. There has been improvement in his seizures and cognition. He is also more alert, energetic, and focused, according to Kara. His therapist and teachers have reported a vast improvement in his skills and communication since beginning this new medication.
“We are thrilled it is working for Julian; however, it is very expensive,” said Kara. The treatment is not covered by insurance and has to be paid out-of-pocket.
First, she needs to find the particular strain of plant that has the high CBDs. Evidently, this one doesn’t grow like a weed. It is a less hardy plant, dies easily, and therefore not favored by growers.
Kara compares herself to the “Weeds” character Nancy Botwin. She is working toward a $6,000 November payment for the bulk of plant materials needed. She uses organic olive oil, and the alcohol to extract the medicine is $100 a gallon. The process takes five to six hours. Once the tincture is prepared, it needs to be tested by a lab for strength to ensure proper dosage — at $100 per test. The lab is in Sacramento, another drive for the Fox-Gaube family.
To be able to continue with this treatment, they need to raise funds. Support them by attending a Fundraiser for Julian, Friday, Sept. 27, at The 101 Live, 10152 Church St., Truckee.
The fundraiser will include music, beer, wine, food, face painting, balloon twisting, hula hooping, and a silent auction.
The family also created a fundraising site for those who wish to donate to the cause, but can not make it to the fundraiser, click here.
According to Kara, more and more parents of children with severe epilepsy are going this route, when it is proven that nothing else works. Research is being done in Britain to show that this is effective treatment for seizures, and parents are reporting anecdotal evidence of marked improvement in their kids after starting CBDs.
U.S. studies on CBDs and seizures in children will begin soon in New York and San Francisco, said Kara.
For more information and to follow Julian’s journey visit click here.