Onset occurred at age 5, almost 5.5, in September 2010, the Thursday of the second full week of school. He came off the bus that way, moving like electricity was running through him, afraid to sleep alone, with urinary frequency. Those symptoms were just the start, as more features (fight/flight anxiety, extreme sensory defensiveness, trouble swallowing, fear of vomiting, dilated pupils and light sensitivity) came on in unexpected waves throughout that year. He did have a “sore throat/cold” and pink eye summer 2010.
We saw many doctors over 18 months; we visited our family doctor, a pediatric urologist, ER doctors, 2 neurologists, psychotherapist, neuropsychologist, allergist, immunologist trying to get to the bottom of all the new symptoms. I was surprised at the ease with which some providers would want to prescribe big-ticket psych drugs without doing things like checking blood sugar or thyroid! He was eventually worked up for diabetes (negative) and other urinary disorders (also negative). As waves of more symptoms hit including, sudden sensory defensiveness, irrational and overwhelming fear of red lights, extreme perfectionism, declaring that he wished he were dead; we scurried from one specialist to another searching for help.
DIAGNOSIS & TREATMENT
We learned about PANDAS from co-workers familiar with Dr. Louise Kiessling's work in RI and from the April 2012 Parents Magazine article on PANDAS. One co-worker was listening to our struggles and ran in with the article saying it sounded just like what I had been describing. I read that article and wondered if the reporter had a spy-cam in my house. Our family doctor looked at the article and agreed that could be a possibility, checking his throat, sinuses, ears, perianal region and blood for strep. The throat culture was positive despite treatment for strep back in Jan-Feb. In April of 2012 with our family doctor, for his initial treatment for suspected PANDAS, he started a round of antibiotics (Pen V), receiving 3-10 day rounds totally about 4 weeks of antibiotics. We saw dramatic improvements 4 days in. No antibiotic = full relapse.
It was clear at my son’s 2-year appointment, that he was not meeting his milestones. He was non-verbal, did not parallel-play, did repetitive play and movements, was in his “own world” and had temper tantrums that were more than what the terrible two’s should be. I was referred to the “Birth to Three” services in CT. My son was given speech and occupational therapy while he attended regular preschool. But by his third birthday, it was clear it was not an appropriate placement and he entered the Special Education Pre-School program. His behavior had declined even further. He ignored his baby sister; was not affectionate to anyone. He would scream if I walked him on the “wrong” side of the road, refused to go into certain stores, or used the “wrong” cup.
Looking over his medical files from this period of his life, he did have strep throat as a toddler. He was on antibiotics for ten days but clearly that was not enough to heal him. That round of strep throat might have gone but our life was PANDAS had really just started. After that he was sick often with many rounds of strep throat along with ear infections, colds and viruses. I joked with the Pediatrician that they were going to name an exam room after him.
Looking back, he definitely had OCD. He was also extremely hyper and impulsive. Worrying about his safety, I built a fence around my backyard because it was hard to keep up with him, especially with a newborn in tow. I call it his college fence because of its cost. At this point he had no formal diagnosis. Although he had many autistic symptoms/behaviors, his special education teacher thought it was not autism. Soon he was diagnosed with Apraxia and the belief was that his tantrums, repetitive behaviors, low muscle tone and inability to play with others were due a severe speech delay. During this time, there was a marked increase in behavioral issues: his tantrums were escalating and getting him into bed was extremely difficult. We basically stopped having play dates because of his behavior; we were becoming more and more isolated every day.
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