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Could this be PANS/PANDAS?

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Can you still have PANS/PANDAS with a negative strep culture? My DS is exhibiting symptoms this last year and I am thinking it could be PANS/PANDAS. We go to a PANS/PANDAS doctor in a few weeks. 

Before his flu shot in Sept 2017, he had nothing.

After his flu shot he developed minor tics, behavior issues, handwriting decline, leg pain where he has to lay down due to the pain. This all started after a flu shot in Sept 2017.

Help...any thoughts?  Thanks in advance!


Feb 2017 – Had cold with ear pain. Would wake up at night due to the ear pain. Went to the pediatrician and they gave topical pain drops.

June 2017 – Had severe sore throat. Sore throat started 4 days prior. Temp 99-101. Malaise, and tummy ache too. Rapid strep came back negative

Later June 2017 - Still had sore throat. Longer throat culture came back negative. But DS felt sick for a while longer.

9/7/17 - Sick with fever and vomiting

9/11/17 -Flu shot 

September after flu shot – Head twitch starts and wheezing. Behavior issues. Handwriting begins to decline. Food intolerances. 

October 2017  - Sick not feeling well

11/15/17 - Sick not feeling well

12/15/17 - Sick and vomiting

12/25/17 - Sick and vomiting

1/28/18 - Sick and vomiting

February – tested for food intolerances. Came back intolerant to many foods. This seems to be a development since the flu shot as prior to that he had no food issues.

March 2018 – Red rash appeared below belly button.  Very tired. Upset stomach. Eventually went away

Since March we have gone GF/DF/egg free and low salicylate

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Yes, one can have PANS without any indication of positive strep.  PANDAS by definition includes strep, but it can be difficult to find.

Of the symptoms you mention, the leg pain seems odd.  I wonder if that might be a separate issue that deserves it's own check.

I have heard of several folks that have had PANS symptoms develop after a flu shot.  I take it from your notes that it was within about 2 weeks of the shot - that is still short enough (in my mind) to link the two, assuming that he never had the head twitch, handwriting and behavior symptoms in the previous year or more.  But for your own sanity's sake, I would recommend against trumpeting the flu shot as the cause to doctors that you see.  Write it down (as you have here), tell one doctor that you trust the most, but most doctors will tend to dismiss you more readily.

In that vein, it is better to suggest PANS rather than PANDAS, not just because you haven't linked strep, but mostly because PANS is less controversial.  Even better, is to ask about ruling out encephalitis.

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