by Brandy Pavia
Today was the day. We’ve had this appointment with a leading Neurodevelopmental Pediatrician for over nine months, and now it’s here. These appointments are extremely hard to get, and the wait lists are ridiculously long, so I was anxious to get the ball rolling. I was even FIVE MINUTES EARLY, which, anyone that knows me knows that this NEVER happens. Ever. So yeah, I’m tooting my own horn for a minute. Ok…back to our regularly scheduled programming…
Let me back up one year to Summer 2017, when the first winds of “Hurricane Bean” began to blow. We haven’t shared this with many people aside from family and very close friends, as we have been navigating through these stormy waters, trying to make sense of exactly what she is going through, while always being mindful of her privacy. The storm started after the 2016-2017 school year ended. It was the end of her 4th grade year, which was her best year ever! A week or so after school ended, we started noticing what can only be described as “OCD-type” behaviors – touching things multiple times in a row with her hands or feet, wanting two or three hugs/kisses and high-fives. To be honest, we were enjoying it, because who wouldn’t love getting consecutive, unprompted hugs and kisses, right?! This seemingly innocent compulsion was anything but innocent, and we were completely unprepared for the eye of the impending storm.
Two and three hugs/kisses, high-fives and the need for repetitive, tactile stimulation quickly turned into involuntary behaviors that can only be described as “contorting,” as we called them. This contorting would involve her trying to fit her limbs into places that they were not meant to fit, for example, shoving her leg in between her mattress and the footboard of her bed, while screaming and crying, seemingly in pain. If we would try to intervene in any way, it would only make matters worse, as her compulsion to recreate the pressure would have her right back where she started. This would happen anywhere, at any given time, and was heartbreaking to watch. The final straw was in late August, after a 3-hour contorting episode that ended with her passing out from sheer exhaustion, and myself sitting on the floor of the hallway, sobbing. Doesn’t that paint a lovely picture for you? Bob Ross would have a field day with my stories!
The next morning, we took her to the ER at Children’s Hospital of Philadelphia (CHOP). We opted not to take her to our local ER, for fear that they would want to keep her for evaluation, adding more stress to an already stressful situation. Since CHOP is renowned for its services, it was an easy decision. Naturally, in typical kid fashion, she made me a liar, and was an angel throughout our entire visit, no contorting, or behaviors of any kind! Thankfully, I had been taking videos of her episodes throughout that entire summer to show to the first available doctor that we could book an appointment with. Even though these videos were never shown to anyone except the doctors at CHOP and were kept in a hidden folder in my phone, it still felt wrong every time I hit the record button. It felt like I was violating her privacy, which is always something that we try to be mindful of. In retrospect, however, these videos wound up being extremely beneficial, and allowed the medical staff get a glimpse into what she was going through. It was her voice.
The ER visit opened the door for her to see a plethora of specialists, from psychiatrists to therapists to genetic specialists. In the meantime, our “crew”, which consisted of family, her amazing behavior therapist/BFF, her outpatient therapists, and her teacher, worked together to help her navigate through these new waters. After much consideration, sleepless nights and exhausting every other avenue, we made the decision to try medication. I wish I could say that the process is easy, but it’s not. It’s a tedious process of elimination, trying to figure out which meds are best suited for her needs, which dosage is right for her, all while monitoring any side effects. The first medication we tried was an SSRI (Selective Serotonin Reuptake Inhibitor), which took the “contorting” component away completely, although the OCD behaviors were still present, albeit lessened. Unfortunately, there is a rare side effect related to autism & SSRIs that causes the pupils of the eyes to fail to constrict, potentially triggering seizures due to excess exposure to sunlight. It’s super rare, seriously, like SUPER RARE, and doesn’t mean that it would happen, but we couldn’t take that chance. Any guesses at who had that super rare side effect?! Ding, ding, ding!
Immediately after learning this, we weaned her off the SSRI. Great, now what?! Her doctor prescribed a different medication used to treat anxiety, again, sort of a process of elimination to see if it helped take the edge off.
Her behaviors waxed and waned, some days would be better than others. I like to use the analogy of Bruce Banner/Incredible Hulk, one minute she would be happy, laughing away, and the next, “Hulking” out crying, angry, throwing things, hitting walls, and occasionally, people. If her skin color were green, the likeness would be uncanny. She was completely unpredictable, which made leaving the house difficult at times, as we were never certain what might set her off.
Fast forward to August 16, 2018. As I mentioned before, we had this appointment booked for over nine months. This was an important appointment because this doctor is a Neurodevelopmental Pediatrician, you know, the doctors that diagnose autism? This doctor is extremely well known, and well-versed on autism and other developmental disorders, so I felt confident that she was in good hands. We sat down in the office, and she began asking me various questions about Bean’s milestones: crawling, walking – piece of cake, she crawled at six months and walked at eleven months! Next, she asked when she said her first meaningful word, which was the month before she turned five years old, when she spontaneously said, “Daddy,” for my husband. It was incredible and a day that we’ll never forget, and of course, I didn’t have a camera handy. Damn kids, they always do the cute stuff when you’re not prepared!
Once we were through the milestone talk, we got into the thick of it – what’s been happening with her, and the reason for our visit. I went on to explain the details of the entire past year, trying as best as I could to be her voice, while remaining respectful of her feelings. I made sure to ask her if it was ok to speak on her behalf and if she was ok with everything. Her response was a big smile, followed by “yesh,” which gave me the green light to proceed.
After everything was said and done, the doctor explained what she believes is the reason for these abrupt changes in her behavior over the past year: PANDAS. No, not the adorable, furry, black and white bears that eat eucalyptus leaves. I wish. This particular abbreviation stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep, and it’s a giant a**hole bear. Let me be clear on something, we would NEVER want to change or cure her autism. It’s part of who she is, her neurological makeup, something she was born with. But PANDAS is an autoimmune disorder that is triggered by a strep infection. Yup, a run-of-the-mill bout of strep throat can trigger it in ANYONE! We all have strep bacteria in our bodies, and in most people, it lies dormant. However, in some children, the antibodies that the body has created to fight a strep infection mistakenly attack healthy tissue in the brain, triggering various movement disorders, neuropsychiatric symptoms, and abnormal neurologic behaviors. Any guesses as to who had strep throat back in early 2017, prior to the onset of the “hurricane” of behaviors? Give up yet? Ding, ding, ding…BEAN!
The hard part about diagnosing PANDAS, is that it’s based upon observation. Doctors can order bloodwork to check strep titers, but if the person has already taken antibiotics to treat a previous strep infection, then the titers will come back low, giving a false negative, of sorts. With treatment options being somewhat limited, the recommendation is typically long-term antibiotics to treat the strep infection and support the immune system.
While her doctor is not 100% certain that Bean has PANDAS, we have decided to undergo treatment. She had an array of blood work done to check her strep titers and has started a two-month trial of antibiotics to see if there are any changes in her behavior and overall mood. With the proper medical care, and appropriate medications, it can be successfully treated!
And so, the hurricane has downgraded dramatically with the help of a great support system, a doctor who was willing to listen, and an amazing little girl who never gave up. The winds may pick up now and then, but our ship is strong enough to weather any storms that she will come across. Always.
Brandy Pavia is a working mom from New Jersey, with two amazing kids: an autistically awesome daughter, “Bean” & an adorably sweet son, “Bear.” Together with her husband, and their dog, Penny, (who is like one of their kids), she enjoys sharing her family’s adventures and encouraging others to embrace autism along the way!