Sandy50

Hi All, I've just started out here. For years, I've been hoping it was just the ADHD... the OCD... the Tourettes... the learning disabilities but my son is being evaluated for PANS. My husband thinks that I am crazy because his behavior Sx would be considered mild for PANS... some meltdowns, bed wetting, and frequent urination. I just need to know that I am not nuts.

Hi Gingermom, I am by no means an expert. I have just started on this journey myself. Is your pediatrician informed about PANS/PANDAS? A few years ago I ended up finding a development pediatrician to manage my son's many medications due to OCD, ADHD, anxiety, and Tourettes. It wasn't until I consulted an OT for gross motor concerns that someone finally asked if my son had been evaluated for PANS/PANDAS. His history of Lyme and encephalitis at the age of 4 (now 10) and his current presenting diagnoses were her cause for suspicion. The dev pedi started him on ibuprofen every 6-8 hours and found a pediatric rheumatologist in our area for us to collaborate with. She ordered an incredibly long list of blood work and a urine sample. The impact on my son's behavior tends to be mild so it can be tricky to tell if the anti-inflammatories are working. That being said, baby talk and OCD symptoms are decreasing. Take care ❤️