My Journey with PANDAS: How I Stopped Taking Meds and Started Eating Right

My Journey with PANDAS: How I Stopped Taking Meds and Started Eating Right

As a PANDAS kid, I know what a journey it is to have my life interrupted, to be repeatedly misdiagnosed and mistreated, and to ultimately find a solution for my tics, compulsions, and other symptoms. It is a long road full of mountains and valleys, and for many, a lifelong journey for peace. 

PANDAS is a complex autoimmune disorder that results from infection with strep. Children with PANDAS syndrome develop severe physical, neurological and psychological disturbances that interfere with their daily functioning. Unfortunately, many children go untreated, sometimes experiencing debilitating symptoms for years until finding the cause and visiting a PANDAS specialist.

While I used to be ashamed or afraid to share my experience with others, I’ve recently found it is actually quite freeing and helpful to be open about my adventure in life. Being open has helped me manage expectations of myself and reduced my overall stress levels. What’s more, sharing my story has led me to a place where I am able to assist other people along their own personal journey. 

So here it goes. 

When I was thirteen I became completely disabled by PANDAS. Almost overnight, I went from being “normal” to a child who was constantly tic-ing, struggling with anxiety, mood swings, and anger to the point where I would break things and put holes in the walls of my parents’ house. I was self-destructive and my relationships with others began to suffer. Nobody had any answers and for years I felt very much alone. 

Fast-forward 15 years, and today I am a functional husband, father of three beautiful girls, and a business owner with minimal tics and anxiety. I enjoy riding bicycles, motorcycles, and flying airplanes, and I take ZERO prescription meds. My company sponsors an annual 5K fundraiser for PANS/PANDAS awareness and advocacy and I’ve been able to reach out into the lives of countless adults and children. I can’t say that my life turned out perfect, but it’s got to be pretty close. So what changed?

I'll be honest, the medicines and conventional treatments we initially looked to never gave me the relief I was hoping for. Most medications and procedures did nothing at all, and the side effects often outweighed any benefits. I share the familiar story of visiting every specialist on the East Coast and trying every treatment option that was available to me, from off-label prescription meds to long-term antibiotics to acupuncture. Nothing worked. 

After more than ten years of searching for answers and struggling to cope with the “physician fatigue” that accompanies weekly doctor visits, I finally decided to take my health into my own hands. I took a low-paying job working in sustainable agriculture where I learned the basics of functional health. I got rid of all social media accounts and minimized my exposure to “triggers” such as electronic device use. During that time I discovered CBD oil, and for the first time in my life, I saw immediate relief.

I see a lot of discussion about diet supplementation and CBD oil in the Pans/Pandas/encephalopathy community. It turns out, CBD Isolate (CBD oil containing zero THC) is highly effective in reducing inflammation and anxiety— a double edged sword for autoimmune/neuro disorders and many other inflammatory health issues including sleep, obesity, skin diseases, muscle recovery, and chronic pain.

CBD provided me the relief I needed in order to focus on holistic practices that I was incapable of advancing in beforehand, such as cognitive behavioral therapies, breathing exercises, weight lifting, reading, prayer, etc. all without side effects. It became a miracle in my life that helped me along my journey to become functional again at a point where I was almost ready to give up.

I feel that it is important to note that dietary supplements (CBD in particular) have become wildly popular recently and the result is an influx of questionable brands offering products of very low quality. Thus, it is critical that you identify a lab-certified product you can trust. I was very fortunate to be introduced to a quality source of CBD from the very beginning, probably due to my early involvement in the space. 

That is also the reason why I started Green Valley Nutrition in the spare room of my rental home in 2017. I started mixing my own CBD oils and experimenting with different doses to see how it made me feel. Pretty soon, I found myself giving it away to friends and family who could benefit from it. Since then, I’ve been fortunate enough to partner with some of the area’s leading pharmacists and physicians in order to develop a product that is helping thousands of people feel, sleep, and live better. 

But CBD isn’t the only thing that helped improve my quality of life. With regards to diet, I firmly believe that the food we eat is our body's primary medicine. No amount of medication can replace the nutrition that we absorb through consuming a healthy diet. One of my favorite physicians put it this way— “there is not one disease or condition that cannot be treated using diet and lifestyle and in some cases, they are the only therapies that can.”

Eliminating sugar and eating a diet of nutrient-dense, whole foods completely changed my lifestyle, elevated my mood, balanced my energy levels, and helped to reduce the frequency and severity of my tics. Conventional medicine can be helpful and has its place, but if you find yourself focusing more on pills and procedures than diet and exercise, I’d suggest it’s time to rethink your strategy. 

Here’s what a typical day looks like for me…

6am: wake up

Breakfast: fresh ground beef with roasted sweet potatoes & onions. Topped with 2 fried eggs and sliced avocado. 2-3 glasses of water or herbal tea with lemon. I prefer to start my day outside and enjoy my first meal of the day in the sunshine.

7am: reading and group study

8-9am: weight lifting or high endurance exercise 

Lunch: egg/chicken salad or grilled chicken and rice with a side of roasted squash or root vegetables (seasonal options).

Dinner: 1 lb steak, pork chops, or Alaskan fish with heaping portions of cruciferous vegetables and seasoned rice or beans. 

Dessert: seared beef liver with maple syrup or raw honey. Trust me, it’s delicious  :)

10pm: bedtime

Here are the supplements that actually helped me: up to 50mg CBD Oil and 2000IU vitamin D in the morning. Up to 2000mg quercetin with one cup of homemade bone broth after dinner. Incorporate these into your daily routine for best results. I could talk about the science behind these supplements all day, but the bottom line is, this is what works for me. 

Living with PANDAS is a daily struggle that has significant implications in many areas of my life and the lives of my family members. I’ll never be the “normal kid” that I used to think I wanted to be. Ironically, the life skills and habits I learned from managing PANDAS symptoms over the last fifteen plus years has transformed my biggest weakness into some of my biggest strengths- empathy, faith, patience, and perseverance. For that, I am thankful. 

I hope my writing helps to offer some hope to those who are currently struggling to find an answer in life. Don’t give up hope. Stay positive. Practice CBT, deep breathing, and meditation. You can find ways to improve your quality of life. Sometimes I find it best to simply step back from our circumstances and just be thankful for that which we have been given. 

Ethan

Back to blog

Leave us a comment!

Please note, comments need to be approved before they are published.