Flu + Strep + PANDAS!

Talk about an about-face!  The bang with which we started the year was quickly followed by a thud.  Two weeks ago, on a Monday, James felt hot after school. By bedtime, he was running a fever.  Things went downhill fast. We had a little kid with the flu, spending most of this days on the couch with short-lived bursts of activity.  I assumed he'd be back on schedule by that Thursday, as his temperature was normal, his diarrhea had vanished, and he was running around again. But then James completely stopped eating.  So to the doctor we went, even though Dad couldn't go to help.  James' doctor looked carefully at James and listened to all my crazy observations, which led her to test for strep throat, even though James' throat wasn't irritated. You know why she tested him, even though it was extremely invasive? My comments about James' irritated mouth and peeling fingertips.  Signs of strep! Very important information for us parents whose kids can't talk. Another amazing bit of information: James had a shot of antibiotics for his strep.  Technology can be grand!  No worries about getting the proper dosage into him.

Over the weekend, little by little, our James slowly began to re-emerge.  Unfortunately, not all the way.  Last Thursday, James was still massively complaining and even tantruming.  He acted this way everywhere : in school, in therapy and at home. He couldn't focus and was unable to decide on an activity.  He wanted to watch a movie, no not THAT movie, WAIT let's play BALL, no, no, I want to READ, and listen to MUSIC NOW no, not that CD.  It was odd and crazy and exhausting.  At one point, James was running around and around our circular dining room table.  While all these sound like autistic behaviors, they were weird to me as they were different, never-seen behaviors, and very intense!  So back to the doctor we went.

James completely and violently lost it in the waiting room.  He had gotten that shot of antibiotics on the previous visit and did not forget it.  I knelt in front of him, pressing my body against his legs and holding his arms. On occasion, when he started bucking, I had to pin him against the back of the chair.  Of course he was screaming at the top of his lungs, terrifying several children.  Although the waiting room was filled to over-capacity, James was seen immediately.  I know this caused a mini-riot as there is now a big sign in the office stressing the importance of making appointments AND being understanding of people with disabilities.  

James' doctor, an adorable Irish gal, knelt right in front of him, got his attention, and said "NO SHOTS today James.  NO SHOTS. Okay?"  He quieted very quickly, and after a few hesitant whimpers, began his happy squeaking.  Did I mention that he is enamored with this very pretty doctor? To make a long story short, James no longer is infected with Strep.  His doctor believes that James is suffering from PANDAS, Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections.   It causes all the behavior I had seen:  irritability, agitation, inability to focus, tics, and OCD-like behaviors.  The doctor said she had seen in in normally developing kids as well as those with neurological issues.  She believed it would fade but warned me it would emerge with re-infection.  Research also mentions that these behaviors could be here to stay. TERRIFYING.  

After a few sleepless nights of worry, we see a much gentler James - our James.  Thank God, he is recovering!  There are still a few inexplicable tantrum-outbursts and super-stimmy episodes, but they seem to be occurring at night, when he is tired, rather than all day long.  We can read entire books again and watch an entire video.  We can play ball and hide-and-seek for more than 5 seconds.  

I am wiped out and ready for the weekend - and it's only Tuesday!