Back in June of 2004, my son, Lucas, was only six years old. He has moderate to severe autism so his behavior reflects his diagnosis. But one morning, he woke up with an acute onset of motor tics. The first day was really abrupt. He started flipping his shoulder and making a sound over and over again. The next day was even worse as the sound kept getting louder. I was unsure what was going on. As the days progressed and he got worse and worse, he developed 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 two. What I didn’t know then was that these were signs of PANDAS disease. At the time I thought he was regressing. That’s why I want to talk about this and how it can relate to autism.
As both a registered nurse and a behavior analyst, I decided that I needed to know if Lucas’s tics were a behavioral problem or a medical problem. To do that I needed some data. I had Lucas’s ABA therapist use a clicker for every time he had some kind of motor tic. 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 he averaged about 1.37 tics per minute. We did this by dividing the number of tics by the number of minutes during the tics. During that time there would be minutes where he’d have four tics and other minutes where he’d have not even one, and it was just so strange. I couldn’t pinpoint what was causing the tics and how to stop them.
What is PANDAS Disease?
I decided to go to Google and search for acute onset tics. What I found was a disorder called Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep. PANDAS can present itself as an acute onset of anxiety, irritability, aggression, deterioration in school performance, motor abnormalities, and more. For Lucas, he was exhibiting motor tics that had no other medical explanation.
At the same time, I noticed that Lucas had open sores – which looked like open mosquito bites or 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 tic disorder, 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 disease, 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. Over the years he was treated many times. Looking back, that’s not really what you should do, because in order to really treat this disease, you shouldn’t be just treating them episodically. But I didn’t know that then. Lucas was 14 before he was actually diagnosed with PANS.
PANDAS Disease or PANS?
PANS is Pediatric Autoimmune Neuropsychiatric Syndrome. Over the years, from the time when Lucas was diagnosed, researchers realized that it wasn’t just strep that was causing these neuropsychiatric syndromes. It could also be Mycoplasma, Lyme disease, or a Staph infection. In the end, what I learned was that there are a ton of kids that have neuropsychiatric syndromes, and this is not a behavior you can treat with ABA. It’s a behavior that must be treated medically. That’s why the antibiotics helped Lucas so much.
Is There A Link Between PANDAS Disease and Autism?
Several of my clients had symptoms of PANDAS disease. One of the clients that really sticks in my mind was Matt. I had known Matt for years, 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 and even peed in the corner of a classroom. 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 into his classroom the next day, and when I went in looked at Matt, all of a sudden, I realized that Matt had PANDAS disease. Matt had tics that included severe, rapid eye blinking and also had throat clearing. I got out my clicker to take the data and clicked for eye blinking and throat clearing. 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 parents, who took Matt to the doctor, and he was put on antibiotics. Everything cleared up after that.
Research and Treatment
There are two great books that I want to recommend that have helped me figure out more about PANDAS disease. 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 about how Beth healed her son, who was typically developing. Both are very helpful if you want to learn more about PANDAS disease.
If, all of a sudden, you have a child or client with acute onset Obsessive Compulsive Disorder (OCD), or acute onset tics, there are many ways you can help with treatment. Cognitive Behavioral Therapy will help to treat any OCD symptoms and other behavioral therapies could help with a tic disorder. The child could have other symptoms like depression or anxiety as well. For children like Lucas and Matt, antibiotics were an effective treatment as well. Talk with a doctor and therapist to come up with the best plan for your child.
It can be hard to know if you need a diagnosis if your child or client is already exhibiting symptoms of autism or OCD. But children with PANDAS can get better with the proper treatment, so it is worth reaching out to a doctor to take a look at their symptoms.
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Autism and PANDAS Disease
You don’t have to have autism to come down with PANDAS disease. In fact, it’s often even more dramatic in typically developing kids because they don’t have any pre-existing symptoms like motor tics. 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. It is not a symptom of autism.
There’s a great website, called pandasnetwork.org, that I would highly recommend you check out to learn more. For all the professionals out there, be on the lookout, because this is a rapidly-increasing disorder that affects both children with special needs and without special needs. We should all be a lot more aware of it and be actively learning for our children and clients.
If your child or client is affected by autism or by PANDAS disease, I want to help. Consider taking one of my free workshops at marybarbera.com/workshop. And if you are not sure of what help you might need, take my free quiz at marybarbera.com/quiz to find a place to start. I have a wonderful community of parents and professionals that help each other and collaborate to find best practices for treating autism. We would love to have you join.
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