Many Doctors. Many Treatments: The long winding road of PANDAS from IVIG to PEX to Rituximab to Helminths

Before
We have 4 kids, Maddie (14), Claire (13), Charlie (10) and Declan (6).  Maddie and Charlie have PANDAS.  Charlie’s came on like a freight train in the summer of 2010 at age 5.   Maddie’s PANDAS was a slower unfolding until she was 9 when suddenly her OCD became unmanageable.  We completely lost her at 11.  Maddie and Charlie were normal functioning kids before their onset of PANDAS.  Maddie was a sweet, loving adorable child who would dance and sing her way through life.  She was OCD-ish but nobody seemed to be concerned so I trusted the doctors…. something I no longer do.  Charlie wasn’t as easy going as my other kids but he had a sweet nature and a sense of humor that went beyond his years. 

PANDAS diagnosis for two children
The summer of 2010 we moved from Chicago to NC.  Days before we moved I had a doctor’s appointment scheduled to have Charlie’s kindergarten physical.  That day he received 4 shots, chicken pox, polio, DTap and MMR.  Shortly after, things got very dark.  Rages that would last for hours and end in crying, begging us for help.  Days filled with screaming, crying, kicking, spitting, biting. He lost eye contact. He would no longer let us touch him. He started to wet himself and the bed despite being potty trained for almost 3 years. He became obsessive. He became sensory deregulated; he stopped wearing clothes because he couldn’t stand the feeling of anything touching his body.   He could once write his name as well as any 5 year olds, maybe better. That disappeared and he was barely capable of a creating a scribble. He started to have throat-clearing tics. He would cover his ears constantly because he couldn't stand noise; it would make him irritable and angry. He would have meltdowns every time we were in the car, screaming and kicking my chair while I was trying to drive. He stopped playing with other kids. He would stand, all alone in his own world on the playground. He stopped telling us he loved us. Our little boy was gone.  While searching for answers, professionals told us everything from this is a reaction to our move over the summer, to bipolar disorder, to oppositional defiance disorder to finally Aspergers.  I knew this wasn’t Aspergers, I would have seen signs before age 5.  I fought the diagnosis but not without resistance.  I was treated like a mother in denial even though I was anything but.  After months of searching for answers we finally discovered PANDAS. 

We found a PANDAS specialist’s website.  When reading the criteria it almost fit Maddie more than Charlie.  We made an appointment and flew both of them back to Chicago from where we had just moved.  He diagnosed both Maddie and Charlie in November of 2010.  Charlie’s symptoms are obviously what led us to PANDAS, but the doctors said Maddie was actually more of a textbook case.  Maddie had chronic strep from the age 3 on.  Several bouts of walking pneumonia, coxsackie, sinus infections and finally post strep psoriasis which led to having her tonsils out when she was 8.  Unfortunately, this didn’t stop the strep; she continued to get it in other places of her body.  She had increased anxiety and OCD but no one ever put two and two together.   She had irrational fears, would constantly tap things, chewed her sleeve until it would disintegrate, would obsess over all sorts of things and had transient tics.  Anytime we addressed her OCD/anxiety with the pediatrician it was dismissed as a phase or a predisposition to anxiety. He told us if the OCD didn’t interfere with school, sleep or friends it was nothing to worry about.  So I trusted him.  Maddie wasn’t diagnosed with PANDAS until age 9.

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