Could my son have PANDAS???

[ecbest131]

Hello there,

I am really worried about my about to be 5 year old son and have done my internet research (which I know isn't always wise) and I found PANDAS. He doesn't check all the boxes, but if someone who knows about PANDAS or has experienced it with their own kiddo could let me know what you think, here is what has happened to him:

*Started throwing up on 10/4, taken to dr. 10/5 and did rapid strep because his dad had it a couple weeks prior, rapid test negative.

*Culture for strep came back positive 4 days later, we then started 10 days of antibiotics.

*several complaints of tummy ache and not feeling well after completing treatment, more tired and sleeping midday when he is not usually a napper, headaches a couple of times

*began vomiting again on 11/1 for 2 days...no strep, no explanation

*he is not in school and does not interact with anyone outside of our immediate family...no one else in our home got sick

*he has always been a high maitenance, emotional kid, but he is sadder, focusing lately on our cat and his grandma being in Heaven, he recently forgot a word that I remember surprised me that he would forget it...

*I honestly haven't seen OCD stuff, so am I insane to think this could be PANDAS??

[ktgrok]

For it to be Pandas there have to be certain criteria, including anxiety and a few others. Stomach pain is not one of the criteria, but has been associated with a large number of Pandas patients. 

Difficulty sleeping, separation anxiety, intrusive thoughts, food refusal, tics, motor skills issues (handwriting, etc) are all possibilities. 

Or, he could just still be exhausted from being sick, or your family might be passing it around - could have an asympotmatic carrier in the family - and he's reinfected with strep. Any illness can cause some brain fog, anxiety ,but I'd get him retested for strep ASAP. 

Also, a tell tale factor in PANDAS is that ibuprofen usually helps symptoms signifcantly. If a few days of Ibuprofen 3 times a day makes it better, and then going off the ibuprofen makes it worse, that's a big clue. However with the stomach issues I'd be cautious about using ibuprofen. 

[Hilltopmom]

For my dd, it was abrupt and startling- in a day or two after having the flu (so PANS, not PANDAS) she became unable to complete a sentence, severe word finding problems, OCD (piling all of her toys on her bed and laying on top of them to protect them). Oh and a weird tic that was gasping for breath in the middle of words.

They thought it might have been a stroke, at first. It was scary. She never returned to her baseline & still struggles. 

Edited November 12, 2020 by Hilltopmom

[kristin0713]

Are you just seeing physical symptoms and nothing neurological?

PANS/PANDAS causes OCD, tics, food restriction (not related to physical stomach upset), extreme separation anxiety, trouble sleeping, urinary problems (such as sudden incontinence), behaviors out of character for the child that would otherwise be classified as mental illness (hoarding garbage), decline in handwriting, decline in cognitive or academic function, behavior regression...

PANS/PANDAS does not always manifest with all of those but in my DD's case, it did.  She had a classic PANS case.  I think you need three symptoms occurring suddenly or directly with/after an illness for it to qualify as PANS/PANDAS.  

Now if he has strep that is not clearing from the body, he is at risk for developing PANDAS.  Strep can lead to brain inflammation which causes all of those neurological symptoms.  I would get him tested after his course of antibiotics is done.