Home » PANDAS or PANS? What’s the difference?

PANDAS or PANS? What’s the difference?

In February, the white paper for PANS/PANDAS was released. There seemed to be some confusion as to whether the PANDAS diagnosis had been replaced by PANS. In reality, it has not. From what I understand, PANS (pediatric acute-onset neuropsychiatric syndrome), is the larger umbrella. PANDAS (pediatric autoimmune neuropsychiatric disorders associated with strep), falls under that umbrella because we know the trigger is strep.

Some of the known triggers for PANS include, but are not limited to H1N1, lyme or influenza, The symptoms are the same, sudden onset OCD, anxiety, anorexia, aggression, mood swings and/or sudden deterioration in schoolwork. There are no easily available, conclusive blood tests for the disorder, hence hesitation by many physicians to treat the disorder. A thorough review of medical history is imperative and then appropriate immune panels can help look at general immune function. This is a start. A skilled immunologist can be a huge help with this.

I have had several phone calls asking the process for us and if I would have done anything different. Joshua is doing wonderfully but there are some things I may have done differently if I would have stopped to take a deep breath. I would have looked at immune function panels. I would have also checked for co- infections such as mycoplasm (highly correlated with violence) and lyme…and good grief I would have run steroids with the IVIG to help prevent the massive headache that sometimes follows (though it has been said that severe headache is one of the best signs of a good IVIG for PANDAS. Some say that Gammunex has fewer side effects than other brands…so if we have to go back, I will go for that. I also wonder what role food allergies play in all of this. We will be taking Joshua to a neuroimmunology (didnt know that existed) workup in June to just make sure we have caught everything.

The more I talk to PANDAS parents, the more I realize that we need to focus in building up his immune system. It will be a long haul, but he WILL continue to improve. Joshua continues to be optimistic and open about PANDAS and is his own biggest advocate.

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