My 10 year old son was a typically developing child – outgoing, academically sound, athletic, and engaged in life until everything changed and he was suddenly showing very challenging behaviors. An illness in December that we thought might be the flu was accompanied by a very high fever with hallucinations. What we didn’t know is that my son’s immune response to this illness was going very wrong and sending antibodies after the wrong proteins, the proteins in his brain. These antibodies crossed the blood barrier to the brain, attacking the basal ganglia, and wrecking havoc in his mind. At first he appeared depressed, then he began to have outbursts to common and simple requests like, “please sit up at the table,” or “use your fork,” or “what would you like for breakfast?” Within a few months he was raging in response to being set off and having severe panic attacks. Sometimes the rages would last an hour or more and I would have to physically restrain him to keep myself and my family safe as he would kick, hit, bite, and spit as though he were fighting for his life or I wold hold his door shut while he punched holes in the wall and tore his bed apart. The panic attacks could last 5 minutes to 3 hours as his heart raced, his eyes dilated, and he banged his head against the wall or wedged himself between his bed and the wall begging me to make it stop, telling me that it was too much, that he couldn’t do this anymore, and to please kill him.
PANS or Pediatric Acute Onset Neuropsychiatric Syndrome is no joke. It is not for the light-hearted. It is not for the coward. As the parent, you feel like you are fighting your child while you are fighting your fears and then you have to fight the system to get the right diagnosis and the right treatment…and then the insurance companies. This has been our reality for the past year and a half and I have immersed myself in the research and am awestruck at what we are learning. I am also heart broken at the number of lives condemned to mental illness because we didn’t know.
So I share this article, and I will continue to share more as I come across them. NPR’s writer Bret Stetka, does a nice job of sharing new research with implications that depression may be a response to infection in some people. This doesn’t surprise me as we know so many other symptoms can present as a response to infection. Take a moment to read this article, become informed, and help those who are suffering get the proper diagnosis and the proper treatment. Be compassionate, be understanding, be an advocate!
If my family had stopped searching when we were told that there was no help for our son and that we needed to hospitalize him, I am sure that he would be institutionalized today. Instead he is home with him family, continuing to heal slowly, surrounded by those who love him and support him through the worst nightmare of his life.