I always knew that Remy was magic, but I never dreamed he was so rare. My son was diagnosed with a de novo genetic mutation in his syntax binding protein gene, a disorder known as STXBP1. This one nucleotide error took two and a half years of testing to find and comes with more questions than answers; it comes with global developmental delays, gross and fine motor dysfunction, moderate to severe intellectual disability and often comes with intractable seizures. It comes with Parkinsonian like tremors, ataxia and apraxia, it comes with one heartbreak after another.
However, with that heartbreak brings incredible beauty and inspiration. The world becomes so simple when your child needs you for every aspect of survival, when your one in thirty million child has a one in a hundred and fifty odds of dying of sudden unexpected death in epilepsy. You give it everything you’ve got and you celebrate every single moment.
I have spent the past three and a half years obsessively studying as much as I can. I take Remy for month-long trips to Ecuador to do oxygen therapy and neurofeedback; he has an acupuncturist, an osteopath, a craniosacral practitioner, a physical therapist, an occupational therapist, a speech therapist, two neurologists, an epileptologist, a developmental pediatrician, two integrative pediatricians (and a regular one too), we do hours of therapy every day and fight tooth and nail for every single inch.
Seizures are, by far, the hardest aspect of Remy’s disorder. Despite his seizures being well controlled without medication, when they hit they absolutely demolish both of us. As an acupuncturist and herbalist, I started studying CBD. I tried all of the top brands on both of us. Some would mildly help his seizures, some would help my stress, others would help his sleep. I was up all night messaging with other moms and reading posts about which CBD might work best and all I was finding was that there was a lot of confusion and products that claimed to be the best product for many disorders—but from years of study and clinical experience I knew herbal medicine is not one size fits all.
After spending hundreds of dollars on products that didn’t help Remy’s seizures, I knew that as an herb nerd, and as a mother, I could do better. The day after I decided to pursue this project I walked into my clinic and Bart asked me if I wanted to collaborate on a CBD and Chinese herb line. Over the past year we have formed a team and a product line that we could not be more proud of—with every detail being looked as not only as herbalists but with me as the fiercest mama bear you’ll ever find.
Our hemp, most of which is grown on Pachamama Farm in Longmont, Colorado, is grown by a farmer who truly respects the plant and the earth. Using absolutely no pesticides, herbicides or even fertilizer, Thomas rotates 8 different cover crops and flowers to potentiate the mineral content and balance the fungal and bacterial colonies. Our Chinese herbs are sourced from Springwind Herbs who are known worldwide to have the most stringent testing and the cleanest Chinese herbs available. Our hemp and herbs are processed with great care and precision using spageric formulation, an ancient alchemical extraction method that not only extracts all of the cannabinoids and terpenes but the minerals and nutrients as well, which are important cofactors to potentiate the functions of the hemp.
We have created five internal formulas, mixing potent Chinese herbs with cannabinoid rich full spectrum hemp. These formulas focus on the most common complaints that we see as practitioners. Rest and Relax focuses on calming the mind and helping with sleep. Relief remedy moves the blood to help alleviate pain. Revive helps boost the qi (and it sure does help me after sleepless nights). Our Complete Spectrum tincture doesn’t have any Chinese herbs in it but does have all of the amazing benefits of our beautifully tended hemp. Our topical Relief Remedy helps ease aches and pains and warms the channels. And last, Remy’s Revenge focuses on wind disorders (typically any form of tremor or convulsion)—this formula is my dream—to help the other families going through what I’m going through, to help those desperately looking for help but only finding more questions.
I could not be more excited to share these products with the world and hope that you love them every bit as much as I do.
Oh, and I should add, my Remy is loving his formula. He is sleeping much better and his seizures and tremors have drastically decreased. He remains the happiest human I know (most days) and the most wonderful blessing I ever could have hoped for.
-Chloe Weber
How to Dose CBD