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Who to see when you suspect PANDAS? ADVICE

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I am completely new to the world of PANS/PANDAS. Another mom mentioned it to me after hearing the list of symptoms from my son and I just started to research last week. My 4 year old has recently had an ear infection that lasted for a month ( took 3 rounds of 3 different antibiotics ). Since the first day he has had separation anxiety which has become worse, he does a weird humming cry when forced to separate at preschool ( for 3+ hours), now he is having rage meltdowns that can last hours that include hitting, kicking, pinching, throwing things, etc. He has had sleep issues since he was 2 and had pneumonia. The docs did a rapid strep test in the office and it was negative but his brother tested positive the same day. Now he is eating less and displaying slight OCD. He has 4 toothbrushes and just last night informed me that there was a specific order in which he had to use them. My question is ...how do you go about pursuing PANDAS or at least ruling it out? My son's pediatrician referred him to a counselor and that's it. I think he needs more. Should we follow through with the counselor or does this sound like PANS/PANDAS? Any advice would be greatly appreciated!!

Thank you!!

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pandasnetwork.org is a good resource for all things PANDAS (and PANS) related.  You can find a list of PANDAS-aware doctors in your state on that site as well.

I am sorry to say that walking into a typical doctor's office and asking them to consider PANDAS won't typically work well.  If that is your only recourse in the short term, you could instead pose the question  "Could you please consider or rule out encephalitis?" That has a better chance of getting you a little bit farther down the road (possibly with some blood work), while you line up a PANDAS doctor.

Do you have an option to keep him home?  I am thinking only of the suffering and effect of trauma.  The separation anxiety is not something he can will away or control.

Is your partner on board with exploring PANDAS?  It may be important to your relationship that both of you are onside; this has sometimes driven a wedge between couples, when one things the other is pandering/spoiling the child.

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