PANDAS/PANS and Autism: The Need to Knows

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, Lucas (my son with moderate to severe autism) was six years old and all of a sudden, he woke up one morning with motor tics. The first day I noticed it, it was a really abrupt, and very acute onset, so he started flipping his shoulder and making a sound. The next day, it was even worse. The sound was louder. I was unsure what was going on.  As I mentioned before, it was very abrupt.

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, it was at age two.

As both a registered nurse and a behavior analyst, I decided that I needed to know, first of all, what the rate was, and also if this was a behavioral problem or a medical problem. I had Lucas’s ABA therapist take a clicker and every time he had some kind of motor tic, I had her click. We were also trying to determine if any parts of the day resulted in more tics than others.

What we found over the course of just a few days is that the one day, he had 500 tics in total, and the next day, for a different amount of time, he had 400-and-something. 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 tics, and some minutes, he’d have 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 tics, 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 sores which looked like open mosquito bites, or like infected lesions on his legs. I didn’t know where they came from. No one else in our family had mosquito bites, or infected lesions on their legs. We decided that we would treat Lucas for the tics, and for the open lesions on the legs, which may or may not be related at that point. Within five days of taking an antibiotic once a day, his tics 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 tics. In fact, every couple months, Lucas would have a bout of tics, that we would treat with antibiotics, and over the years, he was treated many times. Looking back, that’s not really 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, from the time when Lucas was diagnosed, or Lucas had symptoms to when he was diagnosed, they changed it. They realized that it wasn’t just strep that was the infection that was causing these neuropsychiatric syndromes, but it could 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. In the end, what I learned was that there are a ton of kids that have neuropsychiatric syndromes, and there 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 going to 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 would have 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 about 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 tics that included severe, rapid eye blinking. 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, who took Matt to the doctor, and he was put on antibiotics, and it 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. Beth also wrote a second book, called Childhood Interrupted, which is really more like a textbook about the symptoms and treatment. Saving Sammy is more of a story how Beth healed her son, who was typically developing.

You don’t have to have autism to come down with PANDAS. In fact, it’s often even 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 or 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 reading, and I’ll see you next week.