We are waking up from a nightmare or starting to.
A couple months ago my eight year old son came home from religious education sick. He felt too sick to eat after learning about free will in preparation for the sacrament of reconciliation. This is where Catholics confess their sins to a priest and the priest forgives and gives a penance. My son started to think of all the bad things he had done. He told me a few and I helped him make them right but the sins kept coming in the following days, more and more of them. I told him none of the things he was telling me were that bad and I wanted him to not worry about them, that he was a good boy but the confessions continued multiplying in quantity everyday.
The constant confessions, only to me, started to become more about his thinking and less about his actions. I told him he didn’t have to feel bad about thoughts. After about a week the bad thoughts and images became much more distressing and bizarre to him and me. They became guilt, fear, and shame inducing. I had no idea what was going on. It was all too much for him and one day he just broke down crying. He wanted to know what was wrong with him and he told me he wanted to not be alive anymore.
I called his pediatrician the next morning and was referred to a great psychologist who we began seeing weekly. He told my son these were OCD thoughts, they were not true, and helped him develop a few different strategies to deal with them. In the meantime things were still getting worse. His thoughts were coming so fast and still becoming more bizarre. He told me the thoughts were retaliating. He was also starting to have delusions and beginning to say things that made me not want him to be alone for even a second. Plus he was starting to avoid all his favorite things because they would trigger thoughts. He couldn’t enjoy his favorite games, shows, books and was starting to just want to do math problems constantly. If he ever had a moment of peace he would tell me how sad he was. It was heartbreaking.
His psychologist set up an appointment with a pediatric psychiatrist and suggested, with the rapid onset of his symptoms, it might be something called PANDAS caused by a strep infection. The psychiatrist put him on an antidepressant and told us to make an appointment with his pediatrician for a strep test. After almost a week on the antidepressant it was clear that it was not helping in fact he became overly excited, irritable, and he had a couple of his most frightening delusions while on it. During this time, he was given an instant strep test, which was negative, but several days later the culture came back positive. And by the way, he had no symptoms of strep throat whatsoever although both my kids have had it and been treated a few times over the years.
We stopped the antidepressant and he started a ten day course of antibiotics. After a few days he was getting noticeably better. The delusions were gone and the speed at which the thoughts were coming greatly reduced. Over all, his father and I agreed he was 60% better! He finished the medicine and one week out we will repeat the strep test plus he with have a blood test to make sure his strep antibodies are going down. It is the antibodies that actually do the damage in the brain.
I am mostly sharing this because I didn’t know about it. I had at some point heard about a link between tick disorders and strep but not OCD and honestly I didn’t even recognize what he was experiencing as OCD. For a while I did blame the religious education although lots and lots of people go though this sacrament without problems. It appears to have been a trigger but not the cause.
This has been a huge, scary, and emotional learning experience for our family. He will continue to see the psychologist because he is still dealing with it to a lesser extent and depending on the results of the strep tests next week he may need a longer course of antibiotics, but I feel so thankful that what he has can largely be made better. Thank goodness for antibiotics!
Update 05/01/2016: His improvement has leveled off and he continues to test positive for strep despite being on antibiotics for months. We have an appointment with a PANDAS specialist this month with whom we are paying out of pocket. We are hoping she can give our pediatrician some prescribing guidelines.