Did your child suddenly start behaving strangely? Are they anxious about things that they weren’t before? How about school- are they regressing? Have you found yourself Googling symptoms and wondering what happened to your child? You might want to think back and note if they were recently sick.
The internet is full of the diagnostic criteria for PANS/PANDAS. One of the drawbacks of this, though, is that the symptom lists are not all encompassing. One of the biggest reasons that I, and other parents, second guess bringing up this diagnosis with their doctors is because the symptom onset is almost always listed as dramatic or abrupt onset. There is very little room given to what I call the Snowballers: the kids whose symptoms start small and increase in severity or frequency.
They may start with something that is minor, like some anxiety before bedtime and it’s not too alarming- so you don’t race to the doctor. You make a mental note to keep on eye on it. If you notice it getting worse, you’d probably go to therapy rather than to the pediatrician for a strep test. Before long, the anxiety has become intertwined with OCD like symptoms, panic attacks or sleep disturbances.
For us, it started with random unusual fears, minor defiance and bed wetting. Behaviors slowly increased in severity until we were unable to leave our home and things got out of control quickly.
PANS/PANDAS is a beast, and one that comes in so many disguises. Some kids deal with one intense symptom while others experience several all at once. Some kids check every box on the lists while others only check a few. The main point is – if your child has started a new behavior during or shortly after being sick, be on the lookout! Early intervention is absolutely key. PANDAS/PANS is treatable, we just need to spread the word and share our experiences so others can be aware. It can be life altering for the entire family living with undiagnosed PANS/PANDAS.
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