The Unknown Infection That Is Leading to Mental Health Issues In Kids
My son was diagnosed with many things by many specialists, but only one doctor got it right.
How many mothers out there were told that they tested positive for strep? How many of you knew what that meant during labor? What if the antibiotics didn't work and you passed this "strep" on to your children?
My relationship with my son has been a difficult one for years. I began to think that maybe we were meant to argue and this would be our dynamic. I wondered how could I be a mom who just didn't understand her kid? I stayed home with my son up until he was four-years-old. We played, went to story time at the library, made necklaces to work on fine motor skills, and read all the stories you could imagine. It was at story time where I felt my son was not like every other boy in the room. I tried to look for books and references but when I did, the librarians laughed at me saying, "He's just a boy. You're not used to it, but you will." So, I chucked it up to that, he was a boy.
He entered kindergarten, younger than most of the boys in his class because this was the first year of all day kindergarten. The teacher would email, the principal would email—my son was being naughty, he can't control himself, he eats crayons, his fine motors skills were undeveloped. Whoa! Wait a minute. My time as a stay at home mom was my job. I taught my kids well so they were prepared for traditional school. The teacher then alluded to "that he might have ADHD." Let me back up on my own history for a moment. I was an education teacher graduate from Central Michigan University. I had to take classes on how to teach children who struggled with ADD/ADHD. There was no way my son had this disorder. But, the kindergarten teacher wouldn't let it go so the social worker observed him where he was declared negative for ADHD. The school wanted more testing so I took him to a professional. Again, declared negative for ADHD. The therapist did discover that my son had many traits of Sensory Processing Disorder. Yes! This made sense. I went back to the school and we worked out different accommodations for him. He would get brain breaks and work with the OT. He would have fidget toys and a weighted vest.
He went through kindergarten and onto first grade where his teacher was fabulous and he thrived as a student. I no longer got emails and phone calls from teachers. It was one of the greatest years of school for him. Yet, the moment he moved onto second grade, the teacher called me every day declaring he had ADHD. Not only did I have to look into his file at school, but again, I got him retested. I provided more evidence from two different OT's stating he did not have ADHD, but SPD. His second grade teacher didn't know how to accommodate him so she made a point to embarrass him. She would make him wear the weighted vest all day, even if he wanted it off. She would make rude remarks and not give him his fidgets. He would come home crying saying that he hated school. This broke my heart, a second grader who hated school, and had 10 years left. Feeling helpless, my son and I created a hate box. This box was intended to release the hate in our hearts and put it into this box. Every phone call, email, and negative comment she would make, we would drop it into this "hate box" and it made him feel much better. It was a way that him and I bonded and were on the same page.
The next two years, his teachers were amazing and completely supported him and his ways of learning. They were his saving grace for enjoying school again. Something else was brewing though. As he aged, his anger became stronger, melt downs lasted longer and we didn't know how to help him. My son began threatening my two daughters and we began taking him back to his therapist from his kindergarten age. He had total recognition of the wrongs he was doing but said he couldn't control them. I decided to try something new, NeuroFit. This new technology where people struggling with anxiety, depression, hyper activity would have wire placed on your head. What's the harm, right? My son got to miss school and watch a movie. Every time the movie glitched, it was an indication of his brain losing focus. It was a temporary fix but not getting to the root cause. The lady in charge of NeuroFit continued to work with my son and every meeting she would say, "His body is inflamed." I didn't know what that meant so I did the best I could. In the end, my husband and I decided that may be the root cause of the outburst, the anger, the violence and poor decision making was due to anxiety. We put him on a small dose of medicine approved by his pediatrician.
Fast forward another year, now my son is in fifth grade. He began lying to us. It wasn't anything too bad, but he was stealing food in the middle of the night and lying that he had taken. My real fear was that this was going to transfer to school and he would develop these bad habits. My son has been so upset, that he began to say "I don't want to be alive," and "Why don't you just kill me." My son needed more help than any book or article I could ever read. I admitted him into a partial hospitalization for mental health. It was there, my eyes opened.
The psychologist took one look at my son and said, "He has strep. I'm 90% right when I see it." I didn't understand. What is Strep? Is it harmful? How long has he had it? I blindly began looking at medical articles but couldn't find much on it. The lab report came back positive, he had strep. By the doctors words, "Strep has ticks. These ticks look a lot like ADHD and hyperactivity. It's an inflammation in the brain causing outburst and anger. He doesn't know he's acting out, his brain cannot comprehend."
Could this be the reason, that for years we've had this struggle? Could it be that I passed it onto him from labor? How much damage have I done as a parent? Can I ever rebuild this relationship with my son?
We give him the antibiotics and I saw my son for the first time. He listened, he was kind, he played with his sister. How long has he had Strep? How my heart sank, like I have failed him for 10 years. That I was okay with people telling me "He's just a boy" and that is "Sensory Processing Disorder," or "Anxiety." I have been asking him for the last two years, "What is wrong? Why can't you be "normal?" Like we know what normal is, right?
Two weeks off of the antibiotic, the "ticks" slowly came back. He began eating things that weren't food and arguing with his sisters. He began melting down. It got to the point where I asked the pediatrician for another lab test. They said to reach out to the hospital that did his original test. So I hung up and called the hospital. They refused and told me to call the pediatrician. The nurse I talked to was very kind and said to look into PANDAS. "Like the bear," I asked. Yes, like the bear but an acronym standing for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep.
I finally got the doctor's office to send papers to a lab to have my son re-tested. I was right, the Strep was not gone. For a child, they are to be under 250 score, my son was 670. I then did what I always do, looked up information. I went to my phone and looked into my history, and there it was PANDAS, already there. My blinded research already had me at this website. It was there, I saw what my son had—poor penmanship, frequently using the restroom, anger, anxiety, misdiagnosed for ADHD or SPD, the inability to regulate emotions and unaware of actions.
10 years, it has taken me to understand my own son. Has it been diagnosed as PANDAS, not officially by doctors but they are monitoring it now. Research is showing that if it goes untreated, it could cause cognitive impairment. The journey is not over but I finally feel I have some answers and I'm not so lost. I feel I can have an understanding of my son and help him in ways I couldn't before. I have such guilt for not seeing it sooner or being okay with professionals telling me, “It’s just….this.” I want my son to be happy and think back on his childhood as some of his best years of his life. I want him to be happy with who he is. I want him to know he is loved. My fear is that I have damaged our relationship, but my hope says it will always get better. PANDAS is new research that only a few doctors have seen, but they are finding many children have been misdiagnosed. I want to spread awareness for anyone who feels helpless and they don't know what to do. Never give up and keep going. Your answers are out there.