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PANDAS – One Year Later

On May 28, 2015 our blog featured a post by Life Care Wellness therapist Tiffany Tumminaro, who vulnerably shared about her family’s struggle with identifying and learning how to manage her then 6 year-old daughter’s PANDAS/PANS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptoccal/Pediatric Acute-onset Neuropsychiatric Syndrome), a medical condition that mimics severe OCD with physical complications. In this post Tiffany brings us up to date now with their progress.

The PANDAS life… one year later

During spring break this year my post-traumatic stress triggers from our family’s PANDAS trauma last year were in full force. I had intrusive flashbacks of losing my daughter, practically overnight: I could see her again threatening to run in front of traffic, hear the screams from her 3-hour night terrors, and envision the violent rages that went on for hours. That was what we were dealing with a year ago. Fortunately, this year, most of these behaviors of my daughter are gone and are now just memories of our entry into the world of PANDAS.
PANDAS
One year later I’d say we now live in a world of managed confusion rather than one of pure terror. As I wrote back in 2015, we were lucky. The journey of the unknown only lasted 6 weeks for our family. But that path was not an easy one. My clinical therapist brain kept telling me to find our “new normal.” But with PANDAS there isn’t necessarily a new normal. First, PANDAS/PANS affects each child very differently, as do the different treatments for the disorder. Second, just being exposed to strep can cause a relapse in symptoms – as can any infection, virus, allergy or anything else that can cause inflammation in the blood brain barrier. So flares happen frequently during cold/ flu and allergy seasons. And every flare is different. You never know when or how the disorder is going to affect your child. While some symptoms may remain consistent in a child (ours is compulsive hand washing), other symptoms wax and wane. Or new symptoms all together may appear.

Our child has been on six rounds of antibiotics in the past year. Most recently, due to a strep infection, she was on antibiotics for two months before her mental health symptoms subsided. With that being said, overall this year her symptoms were much less intrusive in her daily life. In fact, many of the severe symptoms she experienced at first onset have never returned (night terrors, frequent urination, suicidal/homicidal thoughts, and intrusive thoughts interfering with school). We can attribute this to knowing the red flags, catching it early, having the right doctors in place, supplementing with all the proper medications and vitamins, and moving to an anti-inflammatory, gluten free diet for the past nine months.

In hindsight, I feel like I lost an entire year of my life. So much of every day was spent managing crises, learning about the disorder, learning about the diet changes, finding the right doctors, attending doctor’s appointments, developing a plan with the school, and figuring out a way to stabilize my daughter. I discovered that emotional well-being is relative. One week you can look at your child and think “there she is, my girl, the one I remember before this nightmare began.” The next week you are back at the doctor taking yet another strep swab and culture with the feeling of anxiety that only the “flight or fight” mode can produce.

However, as with any tragedy, there are silver linings. This experience has allowed me to teach other parents and mental health professionals about the disorder – decreasing the possibility of misdiagnosis. It has also given me a refreshed perspective in my clinical practice and has allowed me to look at and treat mental illness in a new way. Finally, it has allowed my children to become incredibly self-aware regarding emotions and the ability to cope and persevere. Obviously, I would gladly reclaim my ignorance if it meant my child did not have to suffer another flare. But life is about taking what we are given and making the best of it. And that is exactly what we will continue to do.

~Tiffany Tumminaro, LCSW, CADC