It usually comes on very suddenly and presents as mental illness. Some of the most common symptoms are sudden onset OCD (Obsessive Compulsive Disorder), severe Separation Anxiety, and motor tics. Our child has all of these and a host of other symptoms.
I thought something was off all through January. He had asked a lot of questions about germs for a week and was not eating his lunch at school and then one morning he washed his hands at breakfast at least 10 times. We went to the doctor that afternoon and were referred to therapists in our area. Things got worse all weekend and Sunday night I googled something like ‘sudden onset OCD in children’ and found PANDAS. By Wednesday, we had lab reports that showed a higher level of strep antibodies confirming my suspicions and were able to start antibiotics. On Friday we saw a specialist and he was officially diagnosed.
He has been on antibiotics and anti-inflammatory medicines for two and half weeks. He is better than he was that first week when we were doing the strep tests but not as much improved as I hoped or expected. My understanding is it may take a couple of months of the medication and some behavioral therapy for us to find our way back to normal.
I’ve tried to write about this a few times. I wasn’t sure how much I wanted to share or if it is fair to my son. I tend to figure my children can have their own online lives when they’re ready and don’t post much information or many pictures of them. And to be honest, I think some of the reason I struggled to decide whether to share what we are going through is the mental illness. Which is terrible, because I would not blame someone for having a mental illness. But I am aware of the stigma attached to that label.
Right now, our lives are chaos and mine is pretty much on hold. He’s very attached to me in particular and I’ve spent a lot of time in grade school helping him get through the day. And even when I can get a break, I haven’t been able to focus on anything else. It just doesn’t seem to matter.
I’m hoping that as we begin to accept what he’s going through and what our ‘new normal’ is for the next few weeks, I can start to focus on some other things and get back to painting and decorating as a distraction and outlet for myself. But only time will tell. So, I’ll be back, but I’m not sure when.
Please feel free to ask me questions, I’ve learned a lot and found a number of resources. I think we were lucky to diagnose him quickly and to find doctors who were supportive as that is not the case for many families.
If you’d like to learn more on your own, these have been great resources for me: