Our PANDAS Story

by Tiffany Tumminaro, LCSW CADC

My introduction began in early April when I noticed my 6-year-old daughter was struggling with some anxiety symptoms. Being the social work mother that I am, I quickly obtained a children’s book about anxiety and started teaching her all the basic tools. However, within less than one week, what seemed to be generalized anxiety progressed to symptoms of OCD, night terrors and panic attacks. She also had been struggling with rage tantrums which included physical violence, throwing things, threatening to physically harm or kill family members and threatening to run in front of traffic; all of which she had never presented with before. The weekend that my daughter came out of the bathroom with her hands bleeding from the excessive washing, I had finally decided she needed help beyond what I could provide at home. As I researched early childhood OCD, the symptoms didn’t seem to fit. All of the research suggested slow onset, which allowed for a missed or misdiagnosis until later in life. Eventually, I clicked on a PANDAS link (which was present on every OCD website I explored). Not only did it describe what my child was experiencing but I also learned the sudden onset of all these symptoms can be caused by a strep virus.

My daughter has a history with strep throat and had been diagnosed with scarlet fever once. At age 4, she had her tonsils and adenoids removed due to having “kissing tonsils.” This history raised concern regarding her new symptoms. In February, I had come down with a severe case of strep throat. During that time, my daughter had been strep tested, too, but the rapid swab test came back negative. In March, my husband came down with strep, as well.

After reading about PANDAS, back to the doctor we went – but not easily. As I discussed the symptoms with the nurse on the phone she started to suggest I obtain a referral to a psychiatrist. I politely informed her I was requesting a strep test to rule out PANDAS before obtaining a psychiatric referral. Once in the doctor’s office, my daughter’s rapid swab strep test, again, tested negative. Since negative in-office tests are not automatically lab tested, I had to request a lab strep test. Additionally, one of her PANDAS symptoms included excessive urination (every 10-15 minutes), so I also requested a test to rule out urinary tract infection (UTI). The doctor was respectful and honored my requests. However, this was preceded with a cautious warning to me about how few children actually meet criteria for PANDAS. Two days later, her UTI test came back negative. Three days later, the strep test came back positive.

As we started her on antibiotics, we felt optimistic about seeing some relief in her symptoms, but we knew we needed to find a specialist. Luckily, there are quite a few doctors in the northwest suburbs of Chicago who specialize in and/or treat PANDAS. After an initial assessment, a second round of stronger antibiotics and some follow-up lab work, her diagnosis was acknowledged. Unfortunately, a formal diagnosis for PANDAS cannot be made because the diagnosis is not yet recognized by the medical or mental health community. And, as far as most health insurance companies are concerned the treatments for PANDAS are considered “investigative” so most treatments are not covered.

At the moment we are in limbo. After completing the second round of antibiotics, many of her symptoms have returned. We now have to make difficult and uncertain decisions. A plasma exchange (IVIG) is recommended in many cases and is considered by some medical professionals to be a cure. However, this process is invasive and expensive (starting around $7000 and out of pocket for most families). Some families choose to keep their children on antibiotics long-term while others pursue holistic medical doctors and treatment plans. None of these are right or wrong because each case is different and each method has proven successful for some families. The hard part is finding the right answer for my daughter and our family.

Our introduction to PANDAS has been discouraging, heart-breaking and somewhat traumatizing. With that being said, my daughter’s case is mild in comparison to many other children who have suffered in silence with this diagnosis. Historically, children have gone many years with a misdiagnosis until their symptoms are so severe that they become disabled. For many, they have been removed from school, psychiatricaly hospitalized and some have been unable to engage in normal daily activity. It is because of the passion, strength and outreach of the families before me that I had access to information to help my daughter immediately. Because of them, my daughter’s hidden strep virus was discovered early. My heart breaks for the families whom have suffered before us, but I am grateful to be able to further educate others in hopes that one day our pediatricians will NOT have to respond by saying “I know what it is but I don’t know much about it.”

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 handwashing), 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.