Our PANDAS/PANS Story
After a strep outbreak in their household, Melissa’s 12-year-old son John began experiencing severe depression and symptoms of numerous psychiatric disorders. Following a 3-year journey to get an accurate diagnosis and effective treatment, both John and his younger sister Elizabeth were diagnosed with PANDAS. Read Melissa’s PANDAS story below, as told in her own words (slightly edited for clarity).
A Family Strep Outbreak
My son John, who is now 15, never got sick much. He was generally always healthy, with occasional exceptions. Sometimes a cough would end up turning into walking pneumonia, and at age 5, he had Scarlet Fever without presenting any strep beforehand. He was a happy child and excelled at everything academically. He loved to clean and follow rules, and he loved reading. He was always hard on himself; behaviorally, he was a dreamchild.
A few years ago, when John was 12, we had strep in the house twice. I had a rapid test done on John and it was negative. He wasn’t feeling ill or anything, but given that I, myself, previously had two strep infections, I had doctors at an urgent care clinic run a full throat culture test as well. The clinic grew the culture and called me back with a positive result for John.
John’s younger sister Elizabeth, who was 9 at the time, was always sick. She had seizures as a baby. She had feeding therapy, hearing loss, GI bleeds, and developmental delays in speech and motor abilities. She seemed to be medically more complex in terms of her needs. She caught colds way more frequently. She struggles more academically but is more social. She has to work much harder than her brother in most things, but she is driven and strong. Elizabeth did have symptoms of strep during the outbreak we had at home, and her rapid test was positive.
John’s Emerging Symptoms and the Struggle to Find Treatment
John started showing symptoms of depression right after the family’s strep outbreak. He was always anxious, but the depression was new. He always seemed to be a perfectionist. I took him for psychiatric care and the doctor prescribed Zoloft. He might have improved somewhat, but nothing too noticeable. He started isolating more. As a teacher of teenagers, I thought, “Ok, these are just the awkward years”—but things got worse.
In a short time, I started noticing bizarre behaviors. He wouldn’t take the bus home and thought people were out to hurt or kill him. One day, I asked him what was happening, and he told me he hears and sees people. He told me they want him to die. I took him in for an evaluation, and the hospital said he needed treatment. He did a partial hospitalization program designed to help him develop coping skills for when he experienced hallucinations and intrusive thoughts. He still saw his therapist during this time, but John didn’t seem like he was happy.
The cycle of worsening symptoms and ineffective treatment kept repeating, to the point where I felt John was unsafe. We danced with inpatient care three times as well as many different partial outpatient stays back to back. It was horrible. Each time John got worse with medication. Drug washes didn’t work. He was diagnosed by his psychiatrist as having major depression with psychotic features and self harm. Later the diagnosis turned to “schizoaffective disorder” with anxiety and depression, and then eventually potential borderline personality disorder and bipolar disorder. They went through so many different diagnoses with my son that I was numb inside. It was depressing to see a growing list of conditions with no effective treatment, and then sit in meetings where psychologists would simply pass off yet another hopeless diagnosis of lifelong psychiatric illness.
I couldn’t believe how easy it was to close the door on my 13-year-old—no blood tests, no X-rays, nothing. Neurological testing seemed like a logical next step, so we scheduled John for an MRI and EEG, as well as some basic tests with bloodwork. All came back clear. I had very little hope and started to think, “Wow, he’s going to be either institutionalized or living with me for the remainder of my life as a constant dependent.”
John was hospitalized in inpatient psychiatric care a total of five times for two-to-three week periods, many times on one-to-one watch. He has been on so many antipsychotics, including clozapine, the so-called “last resort for schizophrenia.” I have seen him repeatedly get worse on psych meds, and ultimately I try to keep him from going back on medication unless the situation becomes truly unsafe for him.
Learning About PANDAS and Getting a Diagnosis
After I learned a little about PANDAS in late 2020, I called the PANDAS Network. Diana Pohlman was convinced John had PANDAS and was super passionate about finding him help. Diana told me she knew I would probably be skeptical at first, and initially I was. She gave me the name of a doctor to see. His fee wasn’t covered by insurance because PANDAS diagnoses are usually considered off-label and my two amazing insurance plans wouldn’t cover treatment.
The doctor was convinced that John had PANDAS. I gave permission to order the labs he suggested and to start John on cefdinir (an antibiotic). Elizabeth had come with us too, simply because she came with us everywhere, and the doctor asked how she was doing. I told him she was fine, but he asked if he could interview her anyway. Afterward, he came back to tell me to have her tested as well. It turned out that her tests for ASO (strep titers) and IgE (autoimmune issues) were much higher than John’s. Based on his examination, he told me both kids needed to go to the ear, nose, and throat doctor to have their tonsils and adenoids removed, and that we should proceed with IVIG. I sat on it. It was a lot to take in.
My entire life was falling apart. Work was difficult. I had recently moved into a special education position and had no support making the transition from general education. I was working in a Inew building, in a new position, and we were doing distance learning. I didn’t have time to learn the new software completely, and some of my colleagues complained about my performance during the pandemic. I had other people at home that needed me, but it was hard to function well with all the stress. I
We ultimately decided to proceed with IVIG treatments for both kids. In July 2021, John did one round of high-dose IVIG. It took about six months of ups and downs to see the results. The psychiatric symptoms began to slip away and his normal demeanor returned. He was able to go back to school and the depression lifted. He has since had mild flare-ups here and there but nothing too bad. The trauma of what happened to us is subsiding but I cannot imagine our life if he had remained in mental health facilities. We are proceeding with IVIG for Elizabeth in hopes that it will help her as well with anxiety and overall health issues.
Finding Support Through PANDAS: Remember, You Are Not Alone
I hope our story helps someone. I hope a year from now I can give others a more encouraging, positive outlook. I’m grateful to everyone that held my hand and assured me that we were on the right path throughout these recent years. So many people think I’m a warrior mom, but the truth is I’m not. I had to learn to check my ego and my emotions and to accept help. I had to reach out to people around me, and they carried me to a healthier place. The support I have from the PANDAS community is amazing.
It took me about a year to understand the biology of what PANDAS really is and how it impacts your child. It’s a roller coaster of emotional ups and downs. All I can say is that family needs to stick together and be supportive. They say it takes a village to raise a child, and the same applies for mental illness. If only I learned these tough lessons earlier. Having good people in your life matters, and parents can’t do this alone.
If your family is struggling with PANDAS, we’re here to help. We offer helpful resources for parents, doctors, and educators as well as information on current PANDAS research and treatment options. To expand your support network during a difficult time, find a PANDAS support group in your area.