Our PANDAS/PANS Story
Trigger Warning: Self-Harm behavior is discussed in this story.
If your child has PANS PANDAS symptoms and subsequently gets diagnosed by a PANS specialist, we suggest initiating treatment right away as per doctor’s orders and know there may be a relapse, educating yourself on this medical disorder, and taking high-risk behaviors extremely seriously.
Our PANDAS/PANS Story
Timothy, age 14, never got sick much. He was always healthy but sometimes a cough would end up turning into walking pneumonia. He had Scarlet Fever without presenting any strep throat beforehand. He was a happy child, excelled at everything academically. He loved to clean and follow the rules and he loved reading. He was always hard on himself and the type of dream child with behavior.
A few years ago, we had strep in the house twice. I had a rapid test done on Tim and it was negative. He wasn’t feeling ill or anything, but I had him tested since I had Strep infections twice. The minute clinic grew the culture and called me back with a positive result for Tim.
Timothy’s younger sister Katelyn, age 10 now, was always sick. She had seizures as a baby. She had feeding therapy, hearing loss, developmental delays in speech and motor abilities. She seemed to be medically more complex in terms of her needs. She usually caught colds way more frequently. She struggles more academically but she’s more social. She has to work much harder than her brother in most things, but she is driven and strong. She had Strep symptoms during a weird outbreak of strep in the area, and she was positive on the rapid test.
My son was 12 and started having symptoms of depression right after we had strep. He had always been anxious but the depression was new. He seemed always to be a perfectionist. I took him for psychiatric care over the depression and he was treated. He might have improved somewhat, but nothing too noticeable. He started isolating himself more. As a teacher of teenagers, I thought, ok, this was the start of typical teenage, awkward years. Things got worse. I noticed bizarre behaviors. He wouldn’t take the bus home and thought people were out to hurt and kill him. One day, I asked him what was happening. He told me he hears and sees people. He told me they want him to die. I took him in for an evaluation; the hospital said he needed treatment. He did a partial hospitalization program. It was fine, but the kid didn’t seem happy. Things got worse. The cycle repeated and he was unsafe. We danced with inpatient care three times and a bunch of partial outpatient placements- back to back. Horrible. Each time the kid got worse with medication. Drug washes didn’t work. The psychiatrist diagnosed him as having: major depression with psychotic features and self-harm; later, the diagnosis turned to schizoaffective disorder with anxiety and depression.
We tested neurology and everything we could think of to do. I took both kids to chiropractic care. Both kids had therapists working with them from the trauma they experienced.
One day, while at a dance class with Katelyn, located at a therapy center with equestrian therapy, I asked the therapist about her services. I mentioned my son’s hospitalization and expressed my concern with my daughter witnessing some of the traumatic events associated with her brother’s hallucinations. This therapist listened attentively and asked me about strep. She told me to look into PANDAS and said call a PANS organization for guidance. The lady I spoke to was convinced and super passionate. I was still skeptical and she even told me she knew I would be. She gave me the name of a doctor to see. He was cash $650 an hour, which I thought was strange because I actually have two amazing insurance plans. We went just for some hope. My daughter came with me because she came everywhere. The doctor was convinced that my son has PANS PANDAS. I said, “ok, let’s do the labs and antibiotics.” He asked me about my daughter. I said, “oh, she’s fine.” He interviewed her and came back to tell me to test her too. Her tests for ASO and Ige were way way higher than my sons. He told me both kids need to go to the ENT to remove tonsils and adenoids and proceed with IVIG. I sat on it.
I wanted a second opinion. I took my kids to a different doctor. She treated both with ibuprofen, steroid bursts, and antibiotics. She had a flare only once with hallucinations, but symptoms were never unmanageable or got to an unsafe level.
My son got way better over time with the antibiotics and steroid burst. We pulled him off antipsychotic meds and he thrived again. He had a few flares after antibiotics and steroid intervals stopped, but overall I was like, wow, treating PANDAS gave me my son back, this is great. I can wait out the ENT until summer and do the IVIG later. The school provided my son with an IEP, plus he dropped all his honors classes, which was helpful. He received an IEP because his IQ tests actually showed a major decline. But he was thriving from the class change.
Things took a turn this past March as we were preparing for spring break to see grandparents in Florida. My son’s therapist told me she was worried about him and to check his body. I did. He cut his arms with a double-edged razor. I said, ok, I got this. I won’t place him in a psych hospital. I will micromanage and hover over him. I slept on his floor and thought I got this. Friday, the therapist sent me photos of my son’s legs that he sent her. They were bloody and horrific. She mentioned he tried to hang himself and very much needs to go inpatient. I flipped out, calmed myself and realized that this was not manageable. I took my son to the ER with a packed bag. My daughter stayed with my husband, scared and worried. I was gone 2O hours before his placement was made with the psychiatric hospital. Needless to say, we didn’t make it for a spring break trip.
My daughter deals with this trauma but internalizes it. She cares for her brother and she just wants this nightmare over. This time around, I knew that my parenting needs to focus around here. She has to have a stronger mom this time. I need her to remain stable and well and hold back my crying ugly tears and fight for both of them.
The course of treatment and process for wellness is underway. The antipsychotic drugs being given at the hospital are not working. My son isn’t eating while there and he believes the voices tell him his food is being poisoned. For his safety, he is on a one-to-one watch right now, which is a relief for us.
I hope our story helps someone. I hope a year from now I can give more positivity. I’m grateful to everyone that held my hand and assured me that we are on the right path. The support I have from the PANDAS community is amazing. It took me about a year to understand the biology and the science of this disorder. It’s a roller coaster of emotional ups and downs. All I can say is family needs to stick together and be supportive of one another. Good people matter and parents need to remain strong and have hope. I can’t wait to get my son home and into the arms of the medical doctors for treatment. We will turn this around this year, and I wholeheartedly believe now that this is a medical condition and we have to treat the psychiatric issues and the medical issues. Thank you for allowing me to share this first part of our story. Our second chapter will be written with a much brighter outcome shortly.