The Investigation
I’ve helped thousands of patients and have even overcome my own health mystery, but in this episode, I share one of the hardest health mysteries I’ve ever faced because it involved my son Jake.
As someone who has triumphed over health challenges and now helps others do the same, I believe in the power of sharing our stories – especially this one that shook my world.
Suddenly Everything Mysteriously Changed
My son Jake was a lively five-year-old gearing up to start kindergarten. It was the summer of 2022, and I noticed shifts in his behavior. He craved more independence, which was only natural as he was growing older. However, alongside this newfound desire for autonomy, something else was brewing.
He started acting out, displaying anxiety, mood swings, and becoming increasingly oppositional. The changes were concerning, but as a loving parent, I attributed them to the whirlwind of transitions he was facing—starting a new school, meeting new people, and adjusting to a different routine. However, as time passed, the signs became more distinct and concerning.
The Symptoms Escalated
In September of 2022, Jake’s issues took an even more perplexing turn. He began chewing on his shirt and experiencing frequent urination. I continued to think it might be anxiety and adjusting to his new school environment but deep down, I knew that something was just not adding up. These challenges persisted as the months went by, and his mood swings and oppositional behavior escalated.
Seeking Answers: Behavioral Therapy and Listening Therapy
Determined to help Jake overcome these challenges, I embarked on a journey of exploring various therapies and solutions. Behavioral therapy gave us some valuable tools but didn’t alleviate the symptoms. We then tried listening therapy which is a very cool concept that involved having kids listen to music. Unfortunately, these didn’t fully alleviate Jake’s struggles.
And, they would continue for months to come.
The Surprising Strep Connection
Fast forward to February of 2023, a crucial turning point in our journey. My husband Scott woke up with a fever and a bad sore throat. He went to the doctor and had it tested. It came back as a streptococcus infection. He was taking antibiotics and was feeling much better but it occurred to me that the whole family should get tested. We didn’t have any symptoms but knowing how contagious Strep is, I thought it would be good to do the test.
I was surprised to discover that we all came back positive. Listeners of the show will know that I am hesitant to use antibiotics when not absolutely necessary given the impact they had on my long-term health but in this case, it was imperative. Strep can cause long-term health issues if left untreated. While I, Jake and my daughter Juliette didn’t have any symptoms, the test and and culture showed that we absolutely did have Strep and so we had to treat it.
Reluctantly, but knowing we had to, I got antibiotics for everyone including Jake. What happened next was beyond interesting. Within days of starting on Amoxicillin, the shift in Jake’s behavior was remarkable. The tantrums ceased, the frequent urination subsided, and Jake’s sweet nature returned. It was as if a veil had been lifted, and my son was back.
Seeing this, I now knew exactly what was happening but just didn’t connect the dots right away…
Unraveling the Mystery of PANDAS and PANS
Enter PANDAS (Pediatric Acute-Onset Neuropsychiatric Disorder Associated with Streptococcus) and PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome). These conditions are triggered by infections like Strep, which can lead to autoimmune responses that target the brain’s basal ganglia—a region responsible for behavior, emotions, and motor control.
The main difference between PANDAS and PANS is that PANDAS is directly related to the Streptococcus virus whereas PANS is triggered by other viruses or infections.
It’s so important for parents to note the behavioral changes (which are often reported as happening ‘overnight’) because PANDAS isn’t always preceded by a notable Strep infection. Like Jake, some kids are asymptomatic and just don’t display the sore throat we associate with Strep throat.
Here are some of the most common symptoms of PANDAS and PANS
- Sudden onset of OCD symptoms
- New and intense fears
- New and intense concerns about things like being clean or putting certain things away
- Stressful thoughts and images.
- Compulsions
- Repetitive jerky motions or ticks
- Anxiety
- Depression
- Mood Swings
- Acting out or hyperactivity
- Behavioral changes like adopting baby talk
- Frequent urination or bedwetting
- Challenges with fine motor skills like handwriting
- Challenges with memory
- Sleep issues
- Sensory issues (sensitivities to noise, touch, or light)
Additional PANDAS and PANS Triggers
In my quest to fully understand what was going on, I wanted to get Jake in to see an expert. Dr. Nancy O’Hara is the pre-eminent expert and luckily for us, she’s just a 3-hour drive away. She explained that while Strep is a common trigger of PANDAS and PANS, it’s not the only one. In fact, she says the cases she sees are typically triggered by mold, Lyme, or other viruses. So, we kept a close eye on Jake and tested for all of these other potential triggers.
Dr. O’Hara had us do a parasite protocol with Jake and interestingly, this brought on some stuttering (which was unusual for Jake). We attributed this to the release of viruses harbored within the parasites. This further reinforced the intricate web of triggers affecting Jake’s condition. I decided to also start using anti-inflammatories with him like a strong curcumin supplement. This is, after all, an autoimmune disease. Just like Hashimoto’s, it’s important to manage the inflammation and be aware of the triggers in order to manage the disease and avoid flare-ups.
Advocating for Awareness and Understanding
As I journeyed through this maze of PANDAS and PANS, I realized that these conditions are far less understood and recognized than they should be. Many families, educators, and healthcare providers remain unaware of their existence. This lack of awareness can lead to misdiagnosis, unaddressed challenges, and unnecessary suffering for children and their families. This is what inspired me to share this personal story. And, why I hope you’ll share it with anyone who has kids, grandkids or works with kids.
My hope in sharing this personal journey is to shed light on PANDAS and PANS and encourage a broader conversation about these conditions. By sharing our experiences and knowledge, we can empower others to seek answers, find support, and navigate their own health mysteries with determination and hope.
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