First meeting with Dr. Murphy tomorrow

[h202]

I recently introduced myself on another question.... got a "presumed" Pandas diagnosis from our psychiatrist and pediatrician about 2 weeks ago, based on unexplained and sudden extreme behavioral issues with my 6 year old son, and high ASO and DNase titers.  

Specifically, in the last few months we have seen very increased hyperactivity, tics and sensory issues (he was already diagnosed with adhd at age 3, but it was well managed), and totally new uncharacteristic behaviors of aggression, violence, separation anxiety, food arguments, defiance, opposition, anger, moodiness, emotional liability, and crying.  He is unable to attend school.

Starting 13 days ago, our pediatrician put him on amox for 3 days. After the first dose, he seemed remarkable calm.  But his bad behavior returned the next day.  The first day might have just been a fluke.  

As soon as she prescribed the amox, his pediatrician spent that weekend reading up on pandas, and switched him to augmentin 10 days ago (600 -- 42.9/5; he's 55 lbs; he gets 6.5ml twice a day).  Pediatrician also prescribed a 5 day prednisone burst starting the same day (15 mg/5; he gets 8.3ml twice a day).  Pediatrician pulled this protocol from a previous patient who had been under Dr. Tanya Murphy's care a couple years ago (we are near tampa).  We are in a fairly emergency situation, so we all agreed we needed to start some aggressive treatment right away while we started the intake process with Dr. Murphy.  

Last dose of Prednisone was Friday night.  Zero improvement that week.  Friday night going to bed, there was a calmness and a happy twinkle in his eye, and saturday morning he woke up 100% improved.  Stayed that way for three days (saturday, sunday and monday).  Yesterday (tuesday) he woke up and was back to the dark side.  I *think* we are back to where we were before starting meds.  In other words, the steroids worked temporarily, but 10 days augmentin (plus 3 days of amox) have not done anything. 

For added background: Mycoplasma tested negative.  Lyme is a near-impossibility (i had a possible-lyme positive test last year, and even a lyme literate doctor agreed there was a near-zero chance i had lyme based on our location/activities). 

We see Dr. Murphy tomorrow for a 2 hour intake.  We got an appointment a week after completing the intake process.   

I've spent plenty of time on this site and other forums reading up on everyone's stories and advice, but i'm still very new to all this.   I understand that different doctors take different approaches and advocate/resist certain protocols.  What should i expect at the appointment?  What do *YOU* all think would be our best shot at treating my son based on the above? (for instance, i get the impression IVIG is often used as a last resort based on cost alone; i'd pay for it tomorrow if it was likely to work).  How do you think your approach (or another doctor's) would differ from what Dr. Murphy recommends tomorrow?   Do you think i will need to advocate for certain things with Dr. Murphy?  I'm not suggesting that i'll disagree with her approach; i just want to be prepared to ask questions, etc.  Thanks!

[bobh]

So sorry that you got no response before your appointment, but ... how did it go, and what is the protocol she is recommending for your child?  I don't know her well enough to know; I have only read a few of her papers.