What If It's Not PANDAS/PANS?

All healing journeys start with an accurate diagnosis.

Diagnosing PANDAS/PANS poses challenges because there is no one specific test to confirm the diagnosis.

While there is a diagnostic algorithm, not all patients present typically and there is no standardized test for clinical evaluation like there is for autism (ADOS) or ADHD (Vanderbilts).

And sometimes the diagnosis requires taking the plunge into the treatment algorithm to see how the child responds to these interventions.

And sometimes......

After so many tests including blood work....

After so many doctor's appointments....

After having hope that healing is near dashed....

After so many treatments, some that have worked minimally, some that have failed spectacularly, some that have caused harm....

After a roller coaster of emotions during the journey....

You may hear that your child's symptoms are not due to PANDAS/PANS.

What happens next?

We go back to the drawing board. We retrace our steps. We review the history once again. We take a deep dive into the chart and what diagnostics we have up to that point.

We assess the various interventions and how your child responded to each of them.

We do further testing or referrals if needed.

We try new interventions that may be lesser known.

It may be autism, ADHD, depression, generalized anxiety, cerebral folate deficiency, disruptive mood dysregulation disorder, primary immunodeficiency, MCAS, or a genetic or metabolic condition.

Remember Dr. Adame is not a PANDAS specialist only. She is a generalist, a highly-regarded nationally recognized expert diagnostician that happens to take care of many PANDAS/PANS patients.

We do not give up on your child.

We will keep on digging until their quality of life is joyful and healthy.

As always, algorithms and protocols are starting points. Dr. Adame and her team meet patients and their families where they are in their journey, whether the child's symptoms started just weeks earlier or they have already received the entire PANDAS protocol including IVIG. She will adjust the diagnostic and treatment strategy depending on previous work up completed, history, and treatment goals.

Dr. Adame believes in shared decision-making with families.

Are you ready to join the Culver Peds PANDAS/PANS Clinic? The first step is to register for a group info session to determine if we are the right practice for your child.

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