On September 26, 2008 my world forever changed. It was supposed to be a day filled with fun and laughter being that it was my son, Mark‘s, 5th birthday. But at about 5pm on that day, chaos broke loose. Mark went into hysterics when he became convinced another child at the party touched his food. Even though no one touched it, there was no way to change Mark’s mind. He ran around screaming, eyes bulging, had no reasoning. We pulled him into his room, but he would run out and drop onto the floor crying. My husband and I stood there in disbelief, unsure of what to do. This wasn’t like any tantrum we had ever seen before. It was different. It was a full-fledged meltdown. The boy we knew and loved was not there. We debated calling an ambulance, but we eventually somehow calmed Mark down on our own. Now our son wanted to be invisible to everyone. He bent down and kind of waddled around, asking us if anyone could see him. This was not a joke, he was serious. We managed to finish the party by accommodating everything Mark wanted done as to try to save the day and the party.
The days following brought on more confusion. We realized our now 5 year old was running to the bathroom every few minutes to wash his hands. He washed them to the point of bleeding. Mark spoke of dirt and germs. He walked around with closed fists and refused to hold hands. His little sister, Ella, was now considered contaminated. Mark couldn’t as much as look at Ella. If she passed him, he spit out his food. If he even thought we touched her, he screamed. Our son appeared to suddenly have OCD. We convinced ourselves that it would go as fast as it came. There were things that one may consider life changes occurring and that must be the reason for all of this. But the real reason was a shock to us all.
It was time for Mark’s 5 year well child check. We were running late since Mark didn’t want to leave the house and refused to put his shoes on. The only way to get him out the door was to hold him down, force his shoes on, and carry our 5 year old to the car. Once there, he wouldn’t let anyone touch him and spat at the nurse and doctor. We explained what had been happening and a strep test was done to rule out a disorder the doctor once read about. The rapid test was negative. We were told to give Mark two more weeks to get better on his own, and then we would have to see a psychiatrist. How can this happen? How can a “normal” 4 year old turn into a 5 year old that needs a psychiatrist in a matter of two weeks? It just didn’t make sense.
Three days later we received a phone call from a nurse from the doctor’s office. They ran a strep culture as well while we were there and it came back positive. Mark did, in fact, have strep. I was actually excited since there was a reason for all of this. I didn’t know what it meant exactly, but there was a reason. Mark did not have a red throat, fever, nothing. We were told Mark might have this thing called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal). We were given antibiotics for the strep and sent on a long journey to figure out what was going on with our son.
It has now been over two years later since that fateful day. We have seen pediatricians, neurologists, psychiatrists, psychologists, etc. Mark has a diagnosis of PANDAS and has now experienced three strep-triggered exacerbations, even after tonsil and adenoid removal. Mark has also had setbacks with viruses and allergies. We found out the hard way that NONE of our three children get symptoms of strep when they are infected. Luckily, Mark is the only one who shows symptoms of PANDAS. With every one of Mark’s PANDAS exacerbations, the symptoms, severity, and the duration has varied, but OCD was always the main symptom. I have seen my little boy convince himself he needed to spin down the hall if he passed his sister’s room; push his chair in over and over until just right; ask me to repeat things back in a specific way or answer questions that I knew darn well he knew the answer to. I’ve had to follow rigid routines that Mark put into place, not wavering at all from them; I’ve watched a 5 year old prepare his own meals since no one else could touch his food and fill a piece of paper up with the number 4 written over and over since 4 was “his number”.
But there was much more than OCD, too. At some point, Mark became agoraphobic, had physical rages, wouldn’t eat any food AT ALL, and even had two hallucinations. Simple touches hurt him, he was overly sensitive to hot and cold temperatures and wet his bed nightly even though he hadn’t done so since he was potty trained at 2 years old. Mark had his childhood innocence stolen from him and was given a life of doubt, worry, anxiety and fear.
You would think along the way, we would have found support and teams of doctors trying to help our young son, but unfortunately that was not the case. We’ve met doctors that have literally laughed in our faces in front of our child, had the nerve to tell us PANDAS didn’t exist, that perhaps my son was “just bipolar” or “just had OCD”, that we were trying to find an easy way out. We saw doctors that should have no right to see suffering children.
Early on, PANDAS parents learn to develop a thick skin. We have no choice but to be strong and fight for our children. We are their voices in a world where many just want to sweep them under a rug and forget they ever existed. My family has fought doctors and PANDAS all the way. Eventually, we got Mark back with the help of antibiotics, steroids, and a whole bunch of time and patience…maybe even a parental nervous breakdown along the way. But I now have a 7 year old that smiles, plays with his little sister, and has no symptoms to speak of. He excels at school, has made friends, and is overall…happy. My son has recovered from PANDAS. I wouldn’t say he is cured, but rather in remission. I pray every day he remains that way and all those families still suffering will find peace and happiness. One sad part is amongst all this elation and triumph, I know there is a microbe sneaking around in the public, at the park, in the grocery store, in Mark’s school and all over the place that can take it all away. I know in a heartbeat we can be thrown into the chaos again.