On not knowing what the fuck is going on with your kid
Link has PANS/PANDAS. You can follow that link to read all about it, but the short version is there is inflammation in his body from bacteria or viruses. These then cross the blood-brain barrier and cause his brain to swell, resulting in a whole host of behaviors.
Getting to this diagnosis has not been an easy journey. No PANS/PANDAS journey is. I would like to think ours has actually been relatively short because from the time we found out PANS/PANDAS exists to getting a diagnosis and treatment plan has only been nine months. However, there have been challenging behaviors for what feels like most of his life. He has always been a different kiddo, and now at least I know why.
I have been blamed for Link’s behavior over and over. I have been called a bad mom. I have been told I am too lax in my parenting. I have been told I am overbearing. His behavior has been because of the divorce, because we move so much, because I don’t provide him any stability, because we travel all the time.
My favorite was when someone told me if I only would just read him the Hands Are Not For Hitting or Teeth Are Not For Biting books, he wouldn’t be this way. And trust me lady….. we had already read them.
I have been accused of seeking a diagnosis. I looked at getting him an autism diagnosis for a period of time simply because this was the only way I could access services I thought might help him. I was out of options and ideas and didn’t want to go the route of medication, but the only way I could get the therapy I needed for him was to have that diagnosis. Also, when he was at his worst (what we call a flare), he seemed very autistic. But it comes and goes, so a definitive autism diagnosis never seemed to make sense.
I can look and see behaviors a long way back. When he was little, thanks to the loving recommendation from a friend I can never thank enough, I had him in occupational therapy. It seemed to help, but it was never enough, and the work we did didn’t seem to stick for long. It was a constant battle.
For about a year, Michaela and I lived in fear of his next outburst. Everything would set him off. It was raining, I said no to a snack because lunch was in 20 minutes, he forgot to flush the toilet, I had a surprise for him and wouldn’t tell him what it was RIGHT THEN, I wouldn’t let him eat chocolate sauce with his hands out of the bottom of a cup in a restaurant. He would become violent in the car to the point we couldn’t drive. He kicked over a whole case of wine, shattering half the bottles all over the floor of the house we had just rented. There was the time he got a grip on my hair and wouldn’t let go. Luckily a friend was home at the time and pulled him off me. He once destroyed his entire room in Australia, including throwing his mattress off his bunk bed, then climbed out the second story window down a drainpipe and over a fence and proceeded to run away. He threw a glass across the room at Michaela once, shattering just inches from her.
It is hard to describe how bad it was. What would set him off was nonsensical, and there was no telling how long it would last or how terrible it would get. It could range from simply screaming for hours on end to these massive physical outbursts that were disproportionately strong for his tiny size. It felt like there was a monster living inside him.
My kiddo. My baby.
In Australia, we once took him to the hospital when he wouldn’t calm down. He had run away in a shopping center and threatened to be unsafe in the car if we went home. “I’ll make us crash, and all die,” he yelled. Michaela sat in the back of the car with him ensuring he couldn't reach me while driving to make sure we would get there safely. The hospital was utterly useless. They gave him some valium so we could get home but otherwise offered no help or solutions.
He would also talk a lot about self-harm. He would tell me he wished he would just die, so it would all stop. More than once, he asked me for a knife to just end it all. He would threaten to jump out the window. He would tell me to tell the doctors to give him medicine that would stop his heart. He would tell me he didn’t feel right in his body and that his head didn’t feel good. What kind of seven/eight year old says that?
I have had the cops called on me because of his outbursts. I have also called the cops out of complete desperation. I was worried he would harm himself, and I was terrified he would genuinely hurt me beyond bites, bruises, and scratches.
In these huge outbursts, he would just black out. We would try to talk to him, and he wasn’t there. When he would calm down, he would tell us he couldn't remember anything that happened. I wracked my brain and researched to try and figure out what was going on. Does he have oppositional defiant disorder? Is he really autistic? Is this just severe ADHD? I even googled how to tell if your kid is a sociopath.
Mercifully, at the height of all of this, a few things happened. First, Michaela was talking to a dear friend who works in a clinic that sometimes sees kids like Link. She told her kids don’t just act like that without something else going on and recommended we listen to a podcast about PANS/PANDAS. Second, I had been reading the book The Explosive Child and began to operate under the premise that kids do well if they can, and if they can’t, then there is something else going on. So with a new trajectory and mindset, we embarked down the path of trying to rule out or confirm this new diagnosis.
We have been through at least five doctors. Finding answers has been incredibly challenging. It has been this game of trusting our guts (both mine and Michaela’s) and trusting but questioning doctors. He has had two massive blood draws testing for everything under the sun. We discovered foods that made him worse, such as food dyes and dairy. We put him on a low daily dose of ibuprofen to see if that would reduce some of the inflammation in his brain, and his behavior markedly improved (this is often a way families can figure out if their kiddo might have PANS/PANDAS). It has been so much trial and error. And we mess up often, such as when we thought caramel coloring in some Halloween chocolate was safe only to have him react to it horribly and set us back to square one. At least Link knows most of what sets him off now and avoids it. He knows when he feels off and often can communicate with us now about what might be going on.
We finally got confirmation last month that PANS/PANDAS is, in fact, what he has. We are now on a treatment path. It’s not straightforward, but we have an incredible empathetic doctor who believes us and wants to help Link get better.
This has been extraordinarily isolating. I mean, how do you talk to people about your violent and out of control kiddo who also happens to be one of the sweetest human beings I have ever met? I have lost a lot of friends because of his behavior. I have distanced myself from many of my friends with “perfect” families because it is simply too painful to be around.
Link feels the isolation too. He has struggled to make and keep friends over and over again. No, this is not simply due to moving all the time. No one wants to come to the birthday party of the kid who kicks other kids on the playground. He desperately wants to be around other kids but knows he sometimes can’t control himself, and that scares him.
I have also chosen not to share his behaviors, suspicions, and how we handle all of it because I feel ashamed. There is so much shame in being the parent with the kiddo you can’t control. I have blamed myself over and over for his behaviors even when I have tried everything under the sun to help him to no avail.
Today is PANS/PANDAS awareness day, and it has been the push I needed to talk openly. It feels much safer to share this story now because we know what is going on, and it has been a while since he has had a particularly bad outburst. He had an awesome summer, where he was mostly regulated and made friends for the first time in a long time.
Most importantly, though, I want to talk about PANS/PANDAS early and often because the more people know about it, the fewer kids like Link will suffer in limbo not knowing what is going on.
While this story doesn’t have an ending yet, we in a happy place. Link is doing well. He loves to read, play Minecraft, and be outside. He is creative, curious, kind, loving, generous, funny, thoughtful, and outgoing. For the first time in a long time, he has started making and keeping friends. He is deeply loved, and we will all keep fighting to help him be the amazing kiddo we know he is.
