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.
I remember the first day that I really knew something was wrong with Catherine.
Prior to that, she was a difficult baby. She had difficulty hitting her milestones, was constantly constipated where she would be up all night screaming. No amount of miralax or pear juice seemed to cure it. It was truly hell on earth.
In November of 2015, when Catherine was 1.5 years old, she started with the ear infections. They were constant, and after only a few months, we were referred for tubes. Upon meeting with the ENT, I brought up her speech difficulties, as she was only saying four words, which all sounded the same. She also had a chronic runny nose that would not go away. He suggested Zyrtec and made an appointment for tubes.
Once Catherine had her tubes in, we thought her speech would take off, but the ear infections persisted and she seemed to get worse.
The day I realized there was something wrong with Catherine, she was pushing her baby doll in her baby stroller. Up and down the sidewalk, she would walk her baby. Occasionally, the stroller would get caught up on an uneven part of the sidewalk and Catherine would throw an all-out temper tantrum because she couldn’t get the stroller to move. I would calmly move the stroller for her, and she would be on her way again. But the fact that she did this, at the age of 2, for more than an hour, was alarming to me. Combined with the fact that she would throw these temper tantrums over something as simple as getting caught up in a part of uneven sidewalk alarmed me even more.
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