My son, Grayson, was diagnosed with PANDAS in January of 2017 while we were living in Raleigh, NC. Our journey to the diagnosis was short and surprising. He was a very healthy, active, and easy going five year old and overnight developed a behavior that seemed a lot like an OCD behavior to me and his dad. He constantly felt like he had loose hair in his mouth and needed to rinse his mouth out to feel like it was gone. This led him to search his food to make sure there was no hair that he could possibly swallow.
After watching this happen with increasing regularity over a couple of days I was trying to decide whether we should take him to a pediatric medical doctor or psychologist. Ultimately, we took him to the pediatrician to rule out anything physical. They wanted to run a strep test since his tonsils were large and inflamed. The rapid test and culture came back positive, so we just thought that he had abnormal symptoms to the bacteria. He never ran a fever or had a sore throat. They started him on antibiotics (AB) in mid-December 2016 and for 10 days we saw his symptom slowly improve. 24 hours after ending the AB, however, the symptom came right back which prompted another doctor office visit. This time his rapid strep test came back negative but his culture came back positive. While waiting for the culture results to come back, they gave him another, slightly stronger AB, since we were seeing the same symptom. Again, he improved slowly over the course of 10 days, but same story once the meds were finished, which prompted a third doctor office visit.
At this point, our pediatrician recommended that I look into PANDAS as a possible explanation. He ordered another rapid strep test and culture, and both came back negative. Given my son’s history and symptoms he was put back on AB and we had a titer check which showed off the charts antibody levels for strep. After doing some research based on the sites the doctor gave me, we felt like our next logical step was to remove the large and inflamed tonsils that may be harboring bacteria not accessible by swab or antibiotics. We were referred to an ENT that had worked with PANDAS patients previously and scheduled surgery for Valentine’s Day. After an extended stint on AB and with surgery, we saw a remarkable improvement to Grayson’s symptom. After about 1.5 months, his mouth rinsing was almost completely resolved and we thought we had slayed this beast in relatively short order.
Fast forward to late July 2017, after a move from Raleigh to Richmond for my husband’s job earlier in the summer. Grayson woke up one day and started rinsing his mouth out again. Additionally, he was constantly needing to urinate and became fixated on where bathrooms might be anywhere we went. He also went from being a highly independent child to having extreme separation anxiety. All of this in the matter of 36 hours. I started looking into pediatric practices that could see him. I wanted to rule out a UTI, knowing that we were most likely dealing with new PANDAS symptoms.
We found a gem in Dr. Alice Condro with Commonwealth Pediatrics! She has been a shining star in a harrowing and constantly changing journey since our move here. I thought that with the surgery earlier in the year and a resolution of symptoms, our time with PANDAS was through. After doing additional research and connecting with groups like the local PANS Research and Advocacy Initiative, I have learned that families may see flares that respond to treatment differently than what previously worked, in no set timeframe. Through extensive collaboration with Dr. Condro, we are still trying to find the right medical combination with this flare. We have been referred to Dr. Zhao and Dr. Jaffe with the Children’s Hospital at VCU.
Grayson has seen steady but much slower improvement compared to this winter. The one thing that I most appreciate about our fight against PANDAS, is having access to knowledgeable doctors and advocacy groups that won’t give up on our kids or on finding a cure that can prevent others from experiencing this. I firmly believe that further research into this and PANS will provide answers greater than we can imagine. By finding biological and treatable triggers to what we now know as brain inflammation, it may change the face of mental health, as we know it. I look forward to becoming more involved in this community, to not only find a lasting resolution to Grayson’s fight but for everyone out there looking for answers!
Mom to a sweet, smart, and strong six year old boy.