P.A.N.D.A.S---Yet another acronym to add to the GROWING list in the game of "What's ailing Sean?'

So it's been QUITE awhile since my last post--and oh so much has happened.  Sean did amazingly well this year until the end of September/Early October.  There was a slight change in his behavior so I began to call the doctor about possible medication issues.  His OCD/Anxiety went through the roof; increased noncompliance and meltdown like behaviors.  At this time, there was a stomach bug circulating the school, but Sean NEVER had the symptoms at that time.

Fast forward 2 weeks to the 15th of October--Chronic complaining of stomach pains, rapid weight loss (15 lbs in 7 days), aches and pains, but no fevers.  We head to the doctor where x-rays pinpoint MAJOR constipation (another chronic issue with Sean despite Mira-lax and probiotics.)  The 16th his behavior became very erratic and he made some statements that were concerning, so against my BETTER judgement to allow him to be assessed at a residential facility.  They made some medication changes.  Almost immediately I noted negative changes.  Zombie like, increasing lethargy, VIOLENT mood swings, extra extra sensitive, sensory issues/regression, academic regression, tics, full blown pupils, etc.  

I blew a gasket.  Refused any further residential treatment after that, (though the school insisted and then made a report to DHS for medical neglect).  I made phone call after phone call.  Spent most of my work week at the school soothing a very distraught, exhausted, freaked out little boy.  November 12th we had another appointment with the psychiatrist.  However, this time our reception was unlike any we'd had before.  EVERYONE greeted him by name; EVERYONE said "oh this is Sean;"  it became VERY evident that the facility knew we were coming in and that he had one perturbed momma with him.

The very first thing the psychiatrist said to me was, "Ms. Ford, I want you to know I THOROUGHLY reviewed his chart yesterday."  Then began to ask questions that verified to me, he had indeed, read the chart.  The first thing we did was review his most recent behaviors and med changes and quickly agreed to DC the newest drug as it seemed to exacerbate EVERYTHING.  We then discussed the physiological things I was noticing, as well as the medical type changes.  It was decided then to schedule him for an EEG to rule out Absence Seizures (we'd discussed this before.)

But the newest thing was the introduction of the term P.A.N.D.A.S to me.  (www.pandasnetwork.org)  When I began reading the information on the website mentioned above (where the graphic is from), I felt like I was reading a check-list for the life and times of Sean, aka the Bugman.  It was such a rush of adrenaline.  Of course, the testing is really expensive and not likely going to be covered by Sean's insurance, so we are relying on letters and pleas to change their minds.  

In the meantime, I have made the decision to begin homeschooling Sean.  We will continue therapy at the school and visit with his peers but he will be attending an online school beginning in January.   I am  not sure how we will manage financially (so if anyone in my area knows of part-time or evening/night work, let me know), but I do know deep in my heart this is what he is going to need to keep him successful.  It will remove the stressors for his OCD/Anxiety and his constant exposure to the germs present.

Keep us in your prayers.  All our love.....