Evelyn’s intrusive thoughts, rage, and vomiting fears were finally linked to strep and a PANDAS diagnosis.
Evelyn’s challenges began early with fears of vomiting, panic attacks, aggression, and ADHD-like behaviors. Over the years she was treated with multiple psychiatric medications, but nothing explained her extreme distress — including nightly panic attacks, intrusive thoughts (“my brain keeps telling me I don’t love you”), and explosive rages that left her remorseful afterward.
After exposure to cousins recently treated for strep, Evelyn suddenly worsened. A throat culture confirmed strep despite a normal exam, and antibiotics brought dramatic improvement. Today she is under the care of an immunologist and beginning appropriate treatment for PANDAS, though struggles remain. Her story underscores how easily PANS/PANDAS can be missed when infections are not considered.
👉 Learn more about treating PANS/PANDAS: https://aspire.care/treating-pans/treating-pans-pandas/
My daughter Evelyn has always been a strong-willed girl with a huge personality! Funny, caring, extremely empathetic, but definitely likes what she likes, and truly probably had ADHD from the start. That was manageable.
While in daycare, she was constantly sick and had a very high pain tolerance. Once her ear hurt, she had a fever, but did not cry or anything; her behavior would worsen, and upon going in, she would have a double ear infection. She had multiple stomach bugs, 5 in a 1-year period. I attributed those to her developing a fear of vomiting. After one around the age of 4, she started waking up in the middle of the night with her body trembling, panicking that she might throw up and scream and cry for 45 minutes straight, to then be like, “Oh, I just had gas”. This would happen a few times a month, and then it died out.
In the summer of 2021, Evelyn’s behavior got worse. She was very demanding, had extreme difficulty when things didn’t go her way, became physically aggressive at times, and, when very upset, would run away from us, hide in the neighborhood, etc. That summer, we had moved to a new house, built in 1925, and with the move and us doing work on the house, her older sisters were going to college, so we figured she was just struggling due to all the changes. We tested for lead poisoning, knowing we were in an old house, and she was fine and under the normal range. We started counseling as she would worry at night and go over her mistakes at school, looking for reassurance that she wasn’t a bad person, etc. She would worry constantly about getting in trouble and replay mistakes for weeks afterwards.
Around Christmas time, my college daughter, who worked at a daycare the previous summer, was home; she picked up shifts and got a stomach bug. This sent Evelyn back into having regular panic attacks and fears of vomiting. Nightly, she wanted me back in her bedroom until she fell asleep, she would wake up in the middle of the night with panic attacks 3-4 times a week, some nights. I am an LCSW, so I took the route of teaching her coping skills, but it was still a nightly routine of trying to use coping tools, distraction techniques, and her needing me for reassurance. (even though that is not the best). She even started to restrict her own sugar, thinking that would help her avoid throwing up, with comments like, “I had one cookie today, I won’t have anything else”, or “Will it make me throw up if I have this ice cream?”
In May of that year, we trialed ADHD medicine, we bounced around with many, all having some sort of negative side effect. We tried an SSRI, and they increased it, and while it helped with sleep and the fears, her behavior was still explosive at times, and it got worse with her becoming even more oppositional. We continued therapies. She is so intelligent, though, she could always say the right thing to do, but couldn’t make it happen. She would say with remorse after a rough day, “See, I can’t do it, I just can’t do it, I can’t follow directions”. “I keep praying to help me be a good listener, and I can’t do”. When she had rage-like episodes, she was always sad and remorseful after, she had such an awareness.
Fast forward, many psychiatric med changes, genetic testing for the best medicine, and counseling, she had her first communion party the following May. Her cousins were there, who had just finished rounds of antibiotics for strep. Then, 4 days later, she woke up and cried when I tried to leave for work, and she kept saying, “Something doesn’t feel right, something doesn’t feel right”. She said her throat also hurt. We had just increased an ADHD medicine, so I contacted that doctor to see about an appointment, wondering if that could be responsible.
She progressively got worse over the next 2 days. At night, she would cry for hours, “my brain keeps telling me I don’t love you, I do love you, why is it doing this?”, “My brain keeps telling me I don’t love Dada and bunny” (her favorite stuffed animal). This would go on for hours with more and more intrusive thoughts, and the distress in her was so elevated that it was heartbreaking. That final night before getting a strep test, I almost took her to an ER to just help ease her distress.
She ran away from me, yelling and fighting, “I wish you knew what this feels like, you don’t understand how this feels!”. She also, in all those days, kept saying “something doesn’t feel right”.
The next day, I pushed for a throat swab. The children’s urgent care said Well, her throat isn’t red, but it came back positive. Each night on her antibiotic, she got better. We found an immunologist who prescribed a 30-day round of antibiotics and Ibuprofen with some supplements. It was a slow progression back, but each day showed progress. She still struggles with anger/aggression, and we are so new to this journey with so much to learn, but it has made me wonder how long this truly has been going on.
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Gabriella True
