Hi this is Dr. Mary Barbera, Autism Mom, Board Certified Behavior Analyst and
registered nurse. Today I'd like to talk to you about PANDAS and
PANS and how it might relate to children with autism. Back in June of 2004 Lukas
was 6 years old and, he has moderate to severe autism, and all of a sudden he
woke up one morning and he had motor tics. So the first day I noticed it, it
was it was really abrupt and very acute onset, so he started you know, flipping
his shoulder and making a sound and the next day, it was even worse the sound was
louder, he was going "Net". Yeah and I was unsure what what was going on. It was
very, like I said, abrupt. So as the days progressed that week, it got worse and
worse and he even had some aggression which was very atypical for him. I think
he bit someone that week and the last time he had bitten anybody was at age 2.
As both a registered nurse and a Behavior Analyst I decided that I needed
to know first of all how, what the rate was, and also if this was a behavioral
problem or a medical problem. I had Lucas's ABA therapists take a clicker, like
this, and every time he had some kind of motor tick I had her click. We were also
trying to determine if any parts of the day resulted in more more ticks than
others. What we found over the course of just a few days is that the one day he
had 500 ticks in total and the next day for a different amount of time he had
400 and something and then we divided those by the number of minutes where the
therapist was clicking and it was really strange because over two days he
averaged 1.37 a minute over both days which was so strange.
Because some minutes he'd have four ticks and some minutes he'd have, you
know, less, not not even one. And it was just so strange that it all equaled out
to 1.37. Anyway I decided to go to Google and start googling acute onset ticks and
what I found was a disorder called PANDAS - pediatric autoimmune
neuropsychiatric disorder associated with STREP. At the same time I noticed
that Lucas had open, it looked like open mosquito bites, like almost infected
lesions on his legs. I didn't know where they came from, no one else in our family
had mosquito bites or infected you know lesions on their legs. But I decided, we
decided that we would treat Lucas for the ticks and for the open lesions on
the legs which may or may not be related. At that point I had no idea. But within
five days of taking an antibiotic once a day his ticks went from 500 a day to zero,
and his lesions on his legs also cleared up. I continued to learn about PANDAS
because that wasn't the last time that Lucas got ticks; in fact every couple
months Lucas would have a bout of ticks that we would treat with antibiotics. And
over the years he was treated many times which, looking back, that's not really the
what you should do because if someone has PANDAS you shouldn't be just
treating them episodically. But I didn't know and it took until age 14 when Lucas
was actually diagnosed with PANS. Now the change from PANDAS to PANS - PANS is
pediatric autoimmune neuropsychiatric syndrome. Because over those years went
from the time when Lucas was diagnosed or Lucas had symptoms to when he was
diagnosed they changed it because they realized
it wasn't just strep that was the infection that was causing these
neuropsychiatric syndromes but it was it would could it be mycoplasma, it could be
Lyme, it could be Staph infection which I would hypothesize that, probably a skin
infection would be more Staph related. But in the end what I learned was that
there are a ton of kids that have neuropsychiatric syndromes and they are
related to bacterial infections and this is not a behavior you can treat with ABA.
It's a behavior that must be treated medically. I'm gonna tell you about
several of my clients had symptoms of PANDAS too and one of the clients that
really sticks in my mind was Matt. He was in a verbal behavior project classroom
and I had known Matt for years. He had more language than Lucas and he
was doing pretty well in general until the day that I got an email saying that
Matt was out of control, he was aggressive, he even peed in the corner of
a classroom and this child was like 10 years old and had been potty trained for
years. They were even thinking that they might need to find an alternative
placement for him. I was scheduled to go in the next day and when I went in and
just looked at Matt all of a sudden I realized that Matt had PANDAS. Matt had
ticks that included severe rapid eye blinking like this. He also had throat
clearing so I got out my clicker, I clicked eye blinking and I tallied
throat clearing and what I found was a very high rate of eye blinking, I could
only keep track for 10 minutes because it was so high. We called the parent,
parent took Matt to the doctor and he was put on antibiotics and that all
cleared up. So there are two great books that I want to recommend that have
helped me figure out more about PANDAS. One is a
book called "Saving Sammy, a Mother's Fight to Cure her Son's OCD"
by Beth Alison Maloney. And Beth also wrote a second book called "Childhood
Interrupted", which is really more of a textbook about the symptoms, the
treatment - this is more of a story how Beth healed her son who was typically
developing. So you don't have to have autism to come down with PANDAS, in fact,
it's often more dramatic in typically developing kids. All of a sudden they
have acute onset OCD or acute onset tics. And they could have other symptoms like
depression, anxiety. I do believe that many children both with and without
autism who have an acute mental health issue should be treated or assessed for
a bacterial infection that could be causing this. There's a great website
called pandasnetwork.org that I would highly recommend and for you
professionals out there just be on the lookout because this is a rapidly
increasing disorder that affects both children with special needs and without
special needs. And we should all be a lot more aware of that. Thanks for watching
and I'll see you next week.