At first glance, I didn’t believe my son’s anger, aggression, OCD, and nightly bed-wetting could be PANDAS. From everything I had read, PANDAS was separated from other disorders by one key component: sudden onset. I wracked my brain trying to recall when these changes had first begun. It all seemed so gradual, really. In fact, we didn’t really consider it might be anything other than behavioral until a series of dental visits sent him into a drastic downward spiral.
So, when did it all begin?
Let me tell you a story.
In March of 2012, we sold all of our possessions and our business and decided to set off to travel the world. Our goal was to be gone a year, survey several locations, and come back to the U.S. with a plan to try out life in some other country or locale. We began our journey in Florida, where my husband was attending a chiropractic conference. About a week into our visit, I became violently ill. I had a sore throat, a massive sinus infection, a fever of 105F, etc. At one point, I asked Steve to please take me directly to the emergency room. And for those who know anything about me, they know that is precisely the very LAST place I would like to be. Ever. In hindsight, I also undoubtedly had undiagnosed strep.
We delayed our flight to New York by a couple days because there was no way in hell I could imagine getting on a plane, and eventually I recovered. Though unfortunately, much of New York is still a bit of a blur to me. We were in New York a few days and then flew to London. Tyler was excited and overjoyed about the prospect of travel. He came alive every time we boarded a plane or arrived at a new hotel. He was a happy-go-lucky kid. Always laughing full belly laughs and telling jokes of his own invention that were lost on everyone else but gave him tremendous joy.
We had a fantastic time in London for several days. We then rented a car and began driving up the center of the U.K. Somewhere along the way, Tyler began some odd behaviors. The most prominent thing I can recall was constantly making himself belch. He would often do this in the car and a few times, he belched so often he vomited. He attributed his belching to feeling carsick, but he had never done this before. For some time, we had been traveling from our home to visit family 3-4 hours away and he had not done this even once before. I thought he was acting out. It was infuriating. But the belching continued and was not happening solely in the car, but at seemingly random times.
Tyler had always been strong-willed so his defiance wasn’t necessarily something new. But the intensity certainly was. In Mallorca for example, I made meatballs one night. He had eaten meatballs many times. For some reason, however, he refused to eat them. You would have thought I was asking him to break his favorite toy. I couldn’t believe the amount of resistance. We held our ground and he wailed for nearly two hours. About meatballs.
Then we began to notice the obsessions.
He became particularly attached to the iPad and would become distraught if the battery died or he couldn’t play it. He decided he didn’t want to walk. Anywhere. (Try that when you have to get on a plane or a train with a 50 pound backpack!) Then, he decided he didn’t want to leave the apartment/hotel/house in which we were staying.
Things became increasingly difficult until one day, in front of the Vatican, no less, he hit a wall. He screamed at the top of his lungs if I got too close, he screamed if I walked away. We were “the worst parents ever” and he wanted to run away. So…there we were, in the middle of Vatican city (with my in-laws), with a child I am fairly certain people either thought we were beating or thought we were bringing to the Pope for an exorcism. In that moment, we decided he must be homesick out of his mind and we needed to end our trip early.
There were however, a few obligations we had made which meant we had another 6-7 weeks on the road. After that breakdown, ironic because of our Jekyll and Hyde musings, Tyler said he felt like two people. He said the one part of him wanted to travel and the other part of him wanted to go home. For the next several weeks, we did not end up seeing much of the world, though I could probably vividly describe the inside of our hotel rooms.
We assumed that the homesickness would resolve after just a few days or weeks back in California. But it didn’t. It only got worse. We thought it would improve when we got settled. And then it got worse. “It will improve when…” became a sort of jaded mantra in our house. It never got better. It only got worse. The anger/aggression turned more violent, the OCD more pronounced, he developed more tics, his anxiety left him paralyzed. And a summer of several lost teeth and a few trips to the dentist (more on the link here later) made our lives completely unbearable.
Perhaps if we weren’t in such a unique situation, we would have seen the signs sooner.
There would have been nothing to attribute them to. In a perfect world, I suppose there are a lot of things I could wish were different.
Since our “coming out” party on social media and the viral nature of this blog, I have had countless people come forward with questions about their own children. Do I think every child has PANDAS or PANS? Not by any means. Do I think there are countless children who have gone undiagnosed or misdiagnosed? Definitely. And I hope that by sharing this story, other parents are able to recognize the signs and symptoms much earlier than we did.