The P.A.N.D.A.S. / P.A.N.S. Page
Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal
infections / Pediatric Autoimmune Neurological Syndrome

9/17/11 - Emailed Dr.Trifiletti with Caroline's symptoms and chronology of onset...
click
here to view the email.

9/18/11 - Phone consultation with Dr T.
We decided to proceed with lab testing and in the meantime try
Ibuprofen to reduce inflammation.  150mg 3x per day.  (we only used it 2x/day)  
WOW.  Caroline was calmer, more engaged, happier.  Definite sign that
inflammation was causing many of her symptoms

9/23/11 - I wrote the above Blog

9/29/11 - Brief Appointment with Dr T.  

Dr. T says her immune profile matches what he sees in children with PANDAS.  She does not
currently show elevated titers to strep, which does not mean she doesn't have PANDAS or PANS.  
He believes her most recent flare was likely virally induced.  She has low IGG levels - low enough
for a CVID diagnosis.  He suggests we begin with antibiotics and she appears to be a good
candidate for IVIG.  

Began Amoxicillin 150 mg 3x per day.  (not Augmentin b/c I've been told it can increase
ammonia levels and Caroline's are already high)  Also giviing HEAVY Probiotics in between every
dose of ABX.

10/2/11 - Compiled a 1 page summary of PANDAS and Caroline's symptoms for her
school.

10/3/11 - Day 4 Amox. very improved, using more words, more engaged,
understanding and listening to directions immensely better.

10/4/11 - Long appointments with two doctors to discuss ongoing sleep issues.  But
other than the sleep, she's showing improvement....

10/8/11 - At dance class, despite picking her up nearly 50 times, she would only lay
on the floor.  Also extremely unengaged at the pumpkin farm.  She's doing very well
at home though.

10/12/11 - Day 13 Amox.  Her coughing tic is almost gone!  Doing amazing.  
Reading nicely, extremely engaged & attentive, handwriting is improving, very
happy day at school.
Appt with Dr T. to discuss IVIG arrangements... decided to try steroid burst first
since it's a very good predictor of how successful IVIG will be.

10/15/11 - Prednisolone Day 1 (15 mg).  WOW.  just wow.  Caroline's doing
amazing.  Her performance at dance class was 1,000% improved from the week
prior... listening, following directions.  Her eye contact, language, engagement and
reading skills are all better than we've ever seen.  Caught myself thinking, "I could
live like this!"  Wow.

10/17/11 - Prednisolone - Day 2 was just like day 1.  Went to a birthday party, she
was calm, happy and engaged.  Two of her best days ever.  On Day 3, we noticed
some of her OCD tics coming back.  Concerned if we should continue, we decided
to reduce the dose to approx 5 mg for days 4 & 5.

10/19/11 - The coughing tic and some OCD behaviors are back and she has a new
one, entering and reentering a room about 3 times before she stays in it.  Worried
that we stayed on the Pred. too long.

10/20/11 - VERY nice drawing at her easel (haven't seen that in several months).

10/21/11 - Nothing has changed tic or OCD-wise.  Brief appt w/ Dr T.  Decided to try
Keflex instead of Amox. since possibly the Pred. decreased her immune system
response enough that the bacteria overcame the Amox.

10/23/11 - She's happier on the Keflex.  The first day on it, she had dance class
and performed better than even the week prior.  Attentive, cooperative & engaged.  
Teeth grinding (which came back after Pred.) is almost gone.  Some OCD remains,
but I'm hopeful -- it's only been 2  1/2 days!

10/27/11 - Things are looking up!  Her throat clearing tic is going away again.  More
engaged, happier, calmer.  (Day 6 Keflex). Phew...    

10/28/11 - Slept well 2 nights in a row, but woke last night.  Still doing very well on
Keflex.

10/30/11 - Losing eye contact and teeth griding & throat clearing tic has increased.  

10/31/11 - Increasingly unengaged and doing tapping  & throat tics.  Eye contact is
gone.   8pm, switched back to Amoxicillin!

11/1/11 - Dramatic increase in eye contact & language.

11/3/11 - Doing VERY well.  More language than ever in her life.  Very minimal
throat clearing tic.... but also increased scripting.  (same as last time on Amox.)
Still waiting on Dr T to finish IVIG paperwork.

11/8/11 - Decided to replace one of the (3 daily) Amoxicillin doses with Zithromax
200 mg.  

11/10/11 - Throat clearing tic that was 80% gone is 100% gone!  No trace of it.
Caroline is doing the best she has been in her life.  Engaged, more social, happy.

11/12/11 - Removed Amoxicillin, just to see.

11/13/11 - Doing great.  Slept through the night (first time in 2 weeks).

11/14/11 - Throat clearing tic is back.  3 pm decided to add back Amoxicillin.

11/15/11 - Rough day. A few laughing fits.  No Zithromax at all.  Meltdown at first
speech therapy.  Not much language at second. by 5pm she's back!

End of November, we decided to give natural antimicrobials a fair try and....
they worked!!  Here's the blog:  
Kickin' it Old School.  
_________________________________________________________________
My Thoughts at the moment:

It's said that 25% or more of children with ASD have PANDAS. I think that's an
extreme understatement.   Expanding the definition to PANS (or a PANDAS-like
illness) I propose that nearly all children who had a negative response to vaccines
have a PANDAS-like autoimmune disorder.

I'm somewhat disappointed that we didn't understand earlier how integral the viral
and/or bacterial overload and her autoimmnue responses are to unlocking the key
to her recovery.

I feel as if we've been piecing together biomedical treatments that have made big
differences, but weren't hitting the #1 most important thing.  What if we had tried
IVIG years ago??  We'll never know.

I would encourage everyone with a child on the spectrum to strongly consider these
autoimmune issues and follow the PANDAS treatment protocols (as outlined above)
to see if there's a response.  You can start with Ibuprofen... about the easiest
"biomedical" treatment available.  If your child improves, you know you're dealing
with inflammation.
________________________________________________________________

Here's a good article to learn more about ...
"If autoantibodies are proven to affect
behaviors, it will change the way we think about and treat mental disorders forever.”
Recently, we began to suspect that Caroline had an autoimmune disorder called
P.A.N.D.A.S.  I wrote a blog about it, which would be a great place to start if you aren't
familiar with it or would like the background on her story or her symptoms.


This page is a follow-up to that blog.  Here you'll find a time line of events,
communication with the doctor, lab work results and medications that we've tried.
For Further Information on PANDAS:



  • There's an excellent Facebook Group
To join it, first, "like" the PANDAS/PITAND?
PANS page and then ask to join the group         
 (mention that Rebecca Ferguson sent you)

Caught OCD" is a recommended Book


Need help
explaining
PANDAS to your
child's school or
therapists?  Try
this
Newsletter
Format...