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Pediatric autoimmune disorders are on the rise here in the US as well as around the globe. In our son’s case, we saw the debilitating symptoms take hold of his life seemingly overnight. The motor tics, the sleep disturbances, the OCD, angry outbursts, school refusal and the anxiety became a part of our everyday life. After misdiagnosis, tests and more tests, it was (no surprises here) my mom network that pointed me in the right direction to Dr. Trifiletti a pediatric neurologist in NJ. Our son was diagnosed with PANS/PANDAS and though at that time, the path was murky at best, I was relieved to have a diagnosis and a treatment plan.
Even after a diagnosis, PANS was still relatively new in 2012 and I had to endure pediatricians, neurologists, developmental psychologists, specialists and even the school tell me they “didn’t believe PANDAS was a real diagnosis”. Admittedly, I myself had never even heard of PANS/PANDAs (Pediatric Autoimmune Neuropsychiatric Disorders Associated with the Streptococcal Infections), and I too was initially skeptical, but my son presented with the “typical” streptococcal diagnosis which meant that the blood test revealed high strep antibodies months after a confirmed strep exposure and within days of antibiotics and Advil (anti-inflammatory) as quickly as it appeared, the OCD just vanished. I was a believer.
My son went into remission, but I knew any exposure to strep (which is extremely prevalent in school aged children) could send him back into a downward spiral. Our move to California tasked me with the mission to find him a new medical team. I knew all of 2 people living in California at the time, so I joined an online moms group and once again the moms pulled through and identified Dr. Elisa Song as the pediatrician to have for kids with PANS/PANDAS. I can not emphasize enough the importance of finding a supportive pediatrician who is knowledgeable about your child’s condition. I hear way too many stories of desperate moms trying to find answers and then having to educate or convince their pediatricians of what the problem is.
We’ve had several flares since then, but Dr. Song is always prepared to execute a treatment plan for him and together we are able to get the flares under control. His strep antibody levels consistently remained high, so after 4 years when he was in the third grade, we had his distinctly enlarged tonsils and adenoids removed. This reduced the overall number of flares, but not the intensity of them. During one particularly taxing flare, I read about CBD on a post in my (where else) mom’s group. I asked Dr. Song about it and she said she had several patients on the oil and the children were benefitting from its powerful anti-inflammatory effects. I delved into researching the right product that day and wow, was I overwhelmed. It took months of research, trial and error, and many dollars wasted before I honed in on why I didn’t want to use full-spectrum CBD (contains some THC) but CBD isolate was not effective for my son. Additional questions were how could I trust which companies guaranteed that what they said they were selling me was indeed in the container and how could I ensure the safety of the product?
I saw the opportunity to create a brand where quality, transparency and education could come together so consumers know exactly what they are getting. I would never sell anything I wouldn’t buy myself, so with every step in the journey, I considered what decision-making points were important to me.
- Organically grown hemp from Oregon, Colorado and Kentucky. Hemp is an amazing plant in that it will absorb heavy metals through its roots and actually leave the soil cleaner than before; which is great for the planet, but not so great if you want to consume the flower and leaves. Our farmers know the history of their land and carefully cultivate our hemp organically.
- Broad Spectrum CBD. Hemp has approximately 113 different cannabinoids in it which work synergistically together in what we in the industry call the entourage effect. Hemp has small amounts of naturally occurring THC which is the cannabinoid in marijuana responsible for producing the “high”. Simply extracting CBD from the hemp would give you Full-spectrum CBD. However, I didn’t feel comfortable using a product everyday that had THC in it for either myself nor for my son. We take an extra step to remove the THC hence leaving us with Broad Spectrum CBD which still has the benefits of the entourage effect. Many companies use CBD isolate because it is odorless, tasteless, inexpensive and easy to mix into products. Please know, the products with isolate gave zero relief to either me or my son.
- Tested for both safety and for content. We third party test our CBD at three different points during the formulation process. We test for heavy metals and microbial levels, and we also test to make sure that all of our products have the amount of CBD we promise on the label. Inside each box, there is a card with a QR code. We encourage our consumers to scan the code with their phone, and they will be taken to their product batch’s lab results.
- No garbage. Our original tincture uses only Broad Spectrum CBD and fractionated coconut oil. Fractionated refers to the process which removes the long-train fatty acids from the oil, leaving only the medium chain triglyceride. This is beneficial because it keeps the oil in liquid form even in cooler temps and also removes the coconut taste and smell. The MCT oil then acts as a carrier oil allowing for high absorption into our bloodstream.
- Paraben, fragrance, dye, gluten, sugar, cruelty FREE. ALL of our products are free of these harmful ingredients. We use essential oils to give our topicals a pleasant aromatic experience.
- Minimal plastic. I tried to minimize the amount of plastic that came in contact with our products. This means glass jars and glass droppers.
- Giving Back. Please know, that we are a privately-owned, mom founded business. We also want to give back to our community. A percentage of all purchases will be donated back to PANS/PANDAS research and support.
I recently read a staggering statistic that parents with a child diagnosed with PANS/PANDAS have a divorce rate of 80%. Honestly, it doesn’t surprise me. Hear me out please in a judgment-free zone. When my PANDAS child is sick in bed listless and weak, my heart automatically feels empathetic and sympathetic towards my child. But when that same child is having a flare, screaming through the night with sleep disturbances, having outbursts and fits throughout the day, and constantly moving due to the motor-tics and OCD, even though my rational brain knows he isn’t doing it on purpose, hour after hour, day after day for weeks at a time (and for some parents, months or years), the empathy can run dry and my primal brain kicks in and responds in ways I wish it didn’t. I have gotten very good at separating the behavior from the child, but even after 7 years of practice, I still fall short. And when parents are sleep deprived and running on empty, there is little left to give to anyone else. I urge all PANS parents to seek support. Start with an excellent PANS/PANDAS support group. There are quite a few on Facebook, and it will bring you to tears when you have found your people. They will help you know what to look for in order to assemble an excellent medical team for your child, and the hive’s wisdom and experience will help you along your journey. If nothing else, you will not feel so alone.
CBD is not a miracle pill. It doesn’t cure PANS, it doesn’t miraculously give you your child back. But it is a powerful anti-inflammatory and used in conjunction with our pediatrician’s protocol, it helps my child enormously. When he is mid-flare, it helps him sleep at night. I use our pain relief salve which we formulated with a Stanford physician to massage into his neck and shoulders at night. When the anxiety builds, the tincture calms him just enough to take the edge off. And as any mom of a PANS/PANDAS kid knows, every little bit counts. Just some good nights of sleep (for the both of us) can be the difference between a day spent at each other’s throats vs. a day where our reserves are full enough to cope with what PANS will throw at us.
Don’t forget the self care. We do so much for our children and for our families. But we have to remember that if we are not taking care of our own emotional and physical well-being, then we are not able to be our best for our families. As a former ballet dancer, I still take class for both the exercise and the mental stimulation. When plantar fasciitis in both feet sidelined me, I entered a downward spiral of not sleeping well at night, having less energy, thus eating more sugar, which contributed to weight gain and even greater drop in energy levels. Weight gain then led to even more pain in the feet as well as a drop in confidence levels. On and on it continues and you can see how the spiral pulls you lower and lower. After months of pain, I started massaging CBD into my feet, and after a few weeks, I could walk painlessly again, which allowed me to slowly return back to dance. Again, it wasn’t a miracle drug, but rather brought down the inflammation enough to turn the tide so I could then do the physical therapy and eventually return to the studio. Many of my moms also use the CBD to alleviate their anxiety/stress levels and/or aid with sleeplessness. A good night’s sleep, an exercise class, art, music, whatever feeds your soul is vital for all moms, but especially PANS/PANDAS moms. Because this is not a short, acute illness that you fight and win. No, this is a marathon that requires vigilance and endurance and we need to be our best selves if we’re going to be the mama our kids need.
Verima was started to help overwhelmed moms and their families be their best selves. Our story is personal and I set out to help other moms and to give back to our community. Please reach out to me if you have any questions, comments or concerns. I would love to hear back from you about your journey with an autoimmune disease in your family.