In honor of PANDAS/PANS Awareness Day, we’re reposting this blog post from LifeCare Therapist Tiffany Tumminaro.
In the past couple of months I have had an unfortunate and humbling introduction to Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal (PANDAS). It is a disorder that most of my mental health colleagues had never heard of and most medical professionals have heard of “but don’t know much about it.” I don’t claim to be a clinical expert on PANDAS (yet), but I can offer my story in hopes it can help at least one family struggling with this traumatizing, hidden disorder.
My PANDAS Story
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.”
For information about PANDAS please visit:
~ Tiffany A. Tumminaro, LCSW, CADC