I want to share my family’s story with PANS to help give hope to any other family that might be going through the same thing. My husband and I have a three-year-old son, Grayson. He came down with the flu on February 27. He was pretty sick most of the week, but on Friday, March 3, he was back to his normal self. We woke up to a living hell on Saturday, March 4. Our sweet boy had literally changed overnight. At first, we just thought that the “threes” that everyone had warned us about had set in. We were doing everything from taking away toys to timeout. We noticed that as the weekend went on, we could not get Grayson to eat or drink pretty much anything. Grayson has always been a pretty picky and light eater, but there have always been things that he would want. He would touch none of those preferred foods. My mother’s instinct told me that something was just not right, even though so many were saying that it was normal for a three year old to have tantrums. These were beyond anything we had ever seen our child do.
I took Grayson to his pediatrician Monday, March 6. Thankfully, we have an amazing pediatrician that takes no chances. She was extremely concerned; she said that any sudden or drastic change in behavior was a cause for concern, especially following an illness. That particular day, our pediatrician had a medical student following her around. The first thing that the medical student said was PANS and PANDAS. I had never heard of either term. We were sent for some lab work, and so ensued the worst week of our lives. Our pediatrician did not want to treat anything until she had the labs back. It was an awful feeling, as a parent, when I looked up what those terms meant. Inflammation on my child’s brain was not what I wanted to see. We watched our child act in ways that are so hard to even think back to. He would get so fixated on particular sounds or things from the OCD onset and all hell would break loose. We have never had a problem putting Grayson in his car seat, but, all of a sudden, the child was terrified of the car seat. It almost took two people to strap him into the seat while he was screaming and kicking and hitting.
The aggression was one of the scariest parts. Grayson had never been one to have any kind of aggression before the PANS. He would try punching my husband and me in the face, intentionally. One day I started the washing machine, which he has never paid much attention to, and he freaked out. He wanted it off and continued to try to beat the heck out of the washing machine. He would also respond this way to the TV being turned on. He would almost break the remote, trying to turn it off. The fits would last hours sometimes. Grayson had been potty trained for a solid six months, but during this time he was having daily accidents. I have never cried so much in my life. My husband and I would be in constant prayer together. We felt like this was never going to end. On Thursday, March 9, we went back to the pediatrician. His lab work tested negative for the strep titer, but did show inflammation. Our pediatrician had consulted with a pediatric neurologist a few hours away and he felt this was definitely a PANS case linked to Grayson’s flu illness.
We were prescribed an oral steroid, which was a fight because Grayson was still refusing to eat or drink most of the time. Grayson was definitely doing better after the steroids, but he still was not fully himself. On March 14, my husband had to take Grayson back to the doctor due to a fever and the behavior not being all the way where our pediatrician felt it should be. Our pediatrician consulted again with the pediatric neurologist. This time they decided to give Grayson a penicillin shot and a three-day round of steroid injections. I cannot begin to explain the difference we saw in our child that same afternoon. Grayson did so well that we did not need the third steroid shot. Our child was back, and we have not had any issues since Grayson finished his treatment. As a parent, there is nothing worse than seeing something wrong with your child and not being able to do anything about it. We know our children and, with that, comes knowing when something is not right. Even when people are telling you that children act out at certain times, we know when it becomes not normal. Follow those instincts.
This story was first posted by the Mom on NEPANS' Facebook page
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