For a long time we thought that our daughter had one of the rare cases of PANS without OCD until we figured out that her OCD just didn't look like the typical manifestations of OCD. Sometimes she would get stuck on something and not be able to let it go or she would be very negative about everything. She was actually having obsessive thoughts that fit an OCD pattern, but there usually were no particular compulsions that went with the obsessive thoughts. Later we also realized that there were obsessive thoughts underlying some of her behaviors and she just never articulated those thoughts. No one knew what was going on in her mind except her. Now that she's a bit older we have lots of conversations about what constitutes a normal worry and what is an obsessive thought and we have a window into her mind that has helped us to help her. I think it's also has been a relief to her.
For a long time I read list after list of OCD symptoms in kids and nothing seemed to fit. I don't know if this is common for PANS/PANDAS kids, but her OCD didn't fit anything I read.
She's doing much better now, but has some lingering symptoms that come and go, and it's only been more recently that we've seen some more straightforward OCD symptoms.
