*I am not a doctor and this post is not meant to give medical advice. I’m just a mom who has had to become a medical advocate for my child, who has learned a lot and started him on a path to healing, and who would like to share what I’ve learned to help other suffering families.

Does my child have PANS/PANDAS? If so, where do I start finding help?

The most frequent question I receive from parents who are finding my family’s story about PANS/PANDAS and Lyme is “How do I get my child tested/diagnosed/treated for P/P?” It seems like a really simple question, but the answer is incredibly complicated. So I thought the answer deserved its own blog post because it is multi-layered.

You’ve likely found this post because you already are following along with my family’s story (or were already a blog reader) and want to know more, OR because you’re searching for answers yourself because you have a child who suddenly started exhibiting very extreme behaviors like anxiety, rage, OCD, food restrictions, and more. That was me just 5 months ago, although it feels like years worth of developments, knowledge, and treatment has occurred during that short time. It took me almost 2 months to realize that Charlie’s behaviors were caused by PANS/PANDAS — that is a really long time when your child is in pain, depressed, suicidal, raging (and I mean RAGING, like they are possessed by demons), stuck in a constant cycle of compulsive thoughts and obsessive behaviors (OCD), having sleep disturbances and food restrictions (like barely eating, only eating very specific things, etc.) I recognized the OCD right away and he was quick to receive a diagnosis of OCD. Unfortunately, our pediatrician and behavioral therapist did not explore anything further than that — no questions regarding other behaviors, recent illness, or anything else. It took Charlie deteriorating more and more for me to be certain there was more wrong and to push for answers. Those two months were critical and had he been treated for PANS/PANDAS earlier things might not have gotten so bad for him.

So if you’re searching for answers because of your kiddo’s sudden unusual behavior (or suddenly increased behavior), you can compare what you’re seeing with these criteria for PANS/PANDAS: (more…)