It has been ten years since I saw my first case of PANS/PANDAS. It was a mom who came to me, not for PANDAS, but for OCD and tics. She had never even heard of PANDAS and just wanted a natural solution to help her daughter with what she thought was a straightforward mental health challenge. I was fortunate to have had a bit of training in PANDAS in naturopathic medical school, and to have had the time in an extensive homeopathic intake to dive deeper than what mom was telling me on the surface. I was also lucky that my practice was still growing, so I had time to spend figuring things out with this case. There was no handbook or algorithm for how to treat PANDAS with any treatment approach, let alone with homeopathy. I leaned in hard to my classical homeopathic and naturopathic medical training, my understanding of physiology and pathology, and I reasoned my way through each visit and each new challenge until we saw this little girl to the other side.
If I were to say that I saw the miraculous and life-changing transformation for this kiddo and never looked back, I would be lying. I did start seeing more PANS/PANDAS cases, but sometimes the intensity of what your families go through felt too much to bear. It kept me up at night, worrying about the family who was counting on me to make their home safe again. I got distracted in meetings and over dinner with my husband as I was trying to figure out why a kiddo who had been doing well was suddenly tanking. Increasingly complex cases made their way to me to the point that I was seeing families who had tried everything and their hopes rested entirely on me. And all I had was my foundations, my grit, and the information I had learned and built on from the cases that came before the latest one. And sometimes, these cases alongside all my other cases of depression, anxiety, bipolar disorder, schizophrenia, and other mental health challenges, felt crushing.
It wasn’t until I had heard from more parents than I can count that somehow I seemed to understand their kids in a way no one else had that it started to click. Somehow, I had a connection to PANDAS that wasn’t clear to me yet. Then, one day on a call with my own mother, it became crystal clear. I was explaining what PANS/PANDAS is, and had at this point realized that my youngest brother met the criteria with a sudden, overnight change in behavior. As I went through the symptoms, my mom and I alternately recalled the times I had experienced most of the symptoms associated with the condition. It was at this point that I let go of any struggle I was having with the increasing numbers of PANS/PANDAS cases I was getting, and actually never looked back. Clearly, I was meant to help these kids, because I was them, and their families were my family.
Since that time, I have learned a lot and a lot has changed. I narrowed my practice focus to only accepting PANS/PANDAS clients. I was having success, even with many that everything else had failed for, so word spread quickly and my waiting list grew too long. Because I now understood that your families are my family, I decided that rather than raise my rates, like any business coach would tell me to do, I started hiring and training more providers. There was clearly a need, and I clearly had something to offer, but could no longer do it alone. As we expanded and grew together, we refined our understanding of so many things, not just about how to manage these complex cases, but about all of the things that are needed for families to recover from PANS/PANDAS.
Key Lessons Learned
Here are just a few of the most important things we have learned about helping families recover so far.
Focused Expertise Matters
This was my very first lesson when I made the decision to refer anyone who didn’t have PANS/PANDAS to another practitioner. It was a scary decision, not just because I was still growing my practice on my own and I had a lot of bills to pay and a massive medical school loan demanding my attention. It was scary because PANS/PANDAS is an incredibly complex condition that demanded that I understand psychiatry, immunology, neurology, endocrinology, genetics/genomics, environmental medicine, and more. Add to this that most parents I saw came with binders full of labs and research, and questions about all of them.
After narrowing my focus to only PANS/PANDAS, it became much easier to understand all the nuances and complexities of the condition, as well as keep up on medical and parent-guided trends in treatments. There is no way I could have continued to see everyone in my already narrow mental health-focused practice and reached the level of comfort, confidence, and success that I see with PANS/PANDAS.
Acute & Vacation Coverage Matters
It matters for you and it matters for your provider. When I was in solo practice, I literally never got a break. I would check my emails and find time to have appointments when I was on vacation or spending time with my family over the holidays. I did this because the one time I did take time off for my honeymoon, no one actually reached out to the outside provider I arranged to cover for me. So I returned to a bunch of people in crisis. That wasn’t good for any of us.
When I narrowed my focus to PANS/PANDAS, I already understood that the rapidly changing nature of the condition meant that having any extended period of time without being able to reach a trusted provider could be disastrous. I also knew from my own experience that having no breaks from demanding work to recharge, or even the ability to get sick or manage a family emergency, would lead to burnout quickly. This is one of the reasons I decided to grow the practice and run it the way that I do – where we are all a collaborative team, working consistently within the same systems, and held to the same standards. It is honestly one of the reasons we chose to employ our providers rather than contract with people operating independently. Consistency matters when it comes to coverage.
I am proud to say that when someone needs to see a provider they don’t normally work with at Resilience Naturopathic, it is seamless for everyone involved. You can rest assured you are getting care that is up to the same standard, that every provider has immediate and full access to the same information, and there is regular communication between providers. Your provider knows that you are in good hands and gets a chance to get true time off when they need it, which means you get a provider who is able to focus on you.
PANS/PANDAS Kiddos Are Sensitive (But Not as Sensitive as You Might Think)
I learned early on that PANS/PANDAS kiddos are a bit more sensitive than the general population. As I watched the community grow and saw what people share on social media, I noticed that people share when they are aggravating and seek support a lot. I also noticed that if you looked at the number of people who shared that they aggravated on social media, it looked like everyone was aggravating all the time. But then when I look at what was happening in the practice, the majority don’t aggravate.
I also saw another phenomenon that we are seeing play out more and more here recently. We are seeing people who think their child is aggravating, and getting increasingly smaller doses without much progress, only to finally take the plunge with a bigger, more aggressive dose and finally get improvement.
Our team has worked really hard to support and learn from each other about how to navigate the balance of supporting the families we work with and also being their own healing force to nudge them to do something that makes them nervous but that could really help.
Individualized Care Really Matters
When you have seen one case of PANS, you have seen one case of PANS. While there is a lot of overlap among what someone with PANS experiences, their individual biochemistry, circumstances, and symptoms vary widely. The way that a person responds to any therapy, homeopathy included, will also vary. I have seen kids who were ultrasensitive to all other therapies have a great, super easy response to homeopathy. I have also seen the reverse, and everything in between.
I have tried to write a decision making flow chart to help guide our practitioners in the management of PANS. It got so convoluted with all the exceptions that it looked like a web made by a spider who had taken illicit drugs. It was so complex I had to stop and focus on the fundamentals of how to decide and how to figure things out rather than telling someone exactly what to do. This goes back to the importance of focused expertise. A strong understanding of both classical homeopathy and PANS is vital so that when you see something new, your provider has the skills to navigate it with you.
Importance of Healing as a Family
After my first dozen or so PANS cases, I started to notice a trend. The kiddo was doing a lot better, but the parent (in most cases mom) was doing worse. There were a few main patterns I saw. The first is that the family had enough relief that they were able to start to relax a bit, which brought more attention to the hypervigilance mom was feeling. Every time there was a normal step back with homeopathy, moms were going into panic mode. They couldn’t shake it, even as things were going really well. Their PANS kiddo would be functioning in the world with no one aware that they had ever had PANS, but mom would still be super anxious at every movement that was reminiscent of a tic, or any routine that could possibly be an OCD ritual.
The second pattern is that now that they were aware of all the things that can happen with PANS, they were seeing warning signs in other kids. Or sometimes it wasn’t warning signs of PANS in other children, but concerns about trauma or adjustment reactions from the impacts of having a PANS sibling. Either way, things were improved enough with the child whose brain was on fire that there was room to see all the ways the fire had impacted everyone else.
I saw that the families who took this information and acted on it, either through starting others on homeopathy or finding some other therapy that worked for them, healed better and faster. Moms especially had an impact. I started to call moms the nervous system of the family because I noticed that if mom wasn’t doing well, healing stalled for kids at a certain point. I also saw that many kids start improving again, not from a change in their remedy, but from mom getting support for herself.
PANS really is a family condition, and everyone needs to be supported for the family as a whole to fully heal.
Beyond learning about the condition and what it takes as a provider and a practice to help a family and a community heal, I have been uplifted by what I see in the community as well. This is the most generous community I think I have ever witnessed. People pour their hearts out for strangers and offer them a hand to help lift them out of the hole they have found themselves in. They do this through sharing their stories, offering prayers and hope for a family who is struggling, paying for others who have less means to get the care they need. They testify in state Capitols to get insurance coverage for PANS/PANDAS mandated. They speak to federal representatives to protect access to homeopathy.
We are very lucky to have several members of the community on our team at Resilience Naturopathic. These are people who have stayed in the fight, sometimes while still struggling in their own families, because they want to make sure every family has the opportunity to recover from PANS/PANDAS. We wouldn’t be the practice we are today without their hearts and their advocacy for everyone we serve. Our community isn’t just at the heart of the decisions we make, we have actual members of the community who are impacted by the decisions helping us make them.
Over the next ten years, we intend to continue to do our part to make sure every family has a chance to put PANS/PANDAS in their past, and to make homeopathy the medicine of the future. Our podcast audience continues to grow. The demand for learning more about homeopathy from conventional and functional providers continues to grow. Our expertise as a team continues to grow. We are advocating for all families to get the care that they need without barriers to access or threats that it will be removed from the marketplace. We have more podcasts to share, books to publish, conversations to have, and more doctors to train. There is a lot of work to do, and a lot of families that still need healing.
I didn’t expect to end up doing what I am doing now or having the amazing team I get to do it with. And I don’t know exactly what the details of the work in the next decade will bring. I expect I will have some of the same roller coaster rides that I have had that got us through the first decade. But one thing I do know is that I will be back, reflecting again in a decade, and feeling the same sense of awe and gratitude that I feel as I finish writing this.
We have evolved to a place where we are partnering with you to help make PANS/PANDAS a thing of the past and homeopathy the medicine of the future. It has been a remarkable, challenging, and awe inspiring ten years. I am looking forward to all that we can accomplish in the next ten.
