Amanda’s PANDAS Journey: From Misdiagnosis to Recovery
Amanda was diagnosed with PANDAS when she was 14 after six months of seeing multiple specialists who either misdiagnosed her or dismissed her symptoms. Her symptoms largely resolved when she was a junior in high school. She is now in her early 20’s, a junior in college on the pre-med track interested in pediatric primary care. She serves on the PANDAS Network Patient Advisory Board. Below is the story of her PANDAS experience in her own words (slightly edited for clarity).
When I finished eighth grade, I had severe tonsil inflammation and a sore throat. I got treatment for strep once, and my family was trying all kinds of things to bring down the inflammation, including steroids. But even with that, it wasn’t going down, so I was scheduled for a tonsillectomy. I don’t remember much from the week after the tonsillectomy, but I do remember coming off the strong pain medications I was on and immediately knowing that something was very wrong.
I was incredibly anxious and suddenly had OCD. I’ve always been a little bit of an uptight person, but that automatically seemed wrong. I’d been treated for anxiety when I was in sixth grade-there was a lightning strike near me, and I got very anxious about storms, and I went through all of the cognitive behavioral therapy for that-but this felt different because I didn’t know what I was anxious about.
My chest was always hurting, and I wasn’t hungry, which was really weird to me. There were a lot of foods I didn’t want to eat, and I was very texture specific. In retrospect, it was ARFID (avoidant restrictive food intake disorder), but because of that, I kind of stopped eating. I was also very depressed. My mom took me to my old therapist, who said she was concerned because I wasn’t able to give her a reason why I was depressed or anxious. She said that she would recommend checking me into a mental facility (which my mom didn’t do because I wasn’t at risk of harming myself or others).
To sum it up, I was suddenly suffering from intense and debilitating anxiety, depression, OCD, emotional lability, brain fog, ARFID and sensory sensitivity, particularly to sound (misophonia). No one could explain what was happening to me: not myself, not my parents and certainly not the doctors we consulted. My condition, especially its acute onset, just did not make sense. In retrospect, now that there is more research about autoimmune encephalitic onsets, I understand that a clustering of sudden psychiatric and neurologic symptoms are often identifiers of illness.
Over the next few months, I was misdiagnosed with Lyme disease, typical anxiety, anorexia nervosa, and, more than once, an overprotective mother. Meanwhile, I was struggling to make sense of what was happening to me. The SSRIs, SNRIs and NDRIs weren’t having significant effects, and my symptoms continued in an unusual cyclic pattern. I lost weight as I continued to restrict my diet because food stopped appealing to me, and I couldn’t handle certain tastes and textures. I dropped my extracurricular activities because just getting through the school day with severe depression and anxiety exhausted me. I was experiencing sudden mood shifts that I couldn’t explain and becoming irrationally upset by every sound around me.
The doctors I visited generally fell into two schools of thought: those who believed that I was just now noticing symptoms that had been developing gradually for years and those who believed that I was making those symptoms up.
I saw about 17 different specialists, so remembering the order is a little difficult. I think the first diagnosis I got was Lyme disease. I went to see a doctor who said, “Yeah, maybe it’s neurological Lyme, we’ll put her on doxycycline and see what happens, but I’m pretty sure she’s faking.” And that was reinforced for him when the doxycycline didn’t do anything. So, I stopped seeing him, and after that and in between, there were a lot of therapist visits and tests.
I saw all kinds of specialists. I saw a rheumatologist; I saw neurologists. I went to a cardiologist who told me that I was suffering from anorexia and body image issues and that I really just wanted attention. So, if my mom forced me to eat and I did a little exercise, I’d be fine. I have to give my mom a lot of credit because I think she really sped up the diagnostic process. It was a very compact six months where she was spending all of her time scheduling doctor’s appointments and researching.
At this point, I had a lot of diagnoses for clinical depression and anxiety. Our lucky break came from a conversation my mother had with a friend. After learning that her friend’s son had been diagnosed with PANDAS after an acute onset of neuropsychiatric symptoms and recurrent strep infections, my mother booked an appointment with a PANDAS doctor. At the time, my mom was vigorously researching everything. About every week or two she’d tell me, “I figured it out. This is what you have; I’m completely sure.” So, I really wasn’t putting any stock in any of that, because first, she was very into the Lyme. But she said, “You have PANDAS. I know it.” And I was like, “Okay, great. I don’t believe you, but okay.”
My mom got me in to see Dr. Susan Schulman, a well known PANDAS doctor in New York, which was a difficult journey for me. I wasn’t doing well, and I didn’t want to be on the subway; I had a lot of sensitivity to noise. But I got there, and she ran The Cunningham Panel, which found three of my five assay results to be abnormally high. These results, combined with my long history of recurring strep infections and my acute onset of neuropsychiatric symptoms, led the doctor to diagnose me with PANDAS. She prescribed my first round of antibiotics. After that, I started seeing Dr. Latimer, a neurologist who specializes in treating patients with PANDAS. She prescribed antibiotics for me.
At that point,the PANDAS diagnosis was more firm, except the antibiotics weren’t doing a lot. So, at that point, I got IVIG. I had a terrible migraine after that, and that whole week after IVIG I didn’t feel great. And then the next few weeks, things were kind of normal, but then there were these small improvements where my mom realized I was coming to the dinner table more, I was eating a little bit more, the OCD got a little bit better. That continued for a little bit, and I would say I was probably 50% back to myself. This whole time I’m still taking antibiotics.
Four months after my first round of IVIG, I told my doctor that I was experiencing a 50% reduction in PANDAS symptoms. I had a second round of IVIG two months later, and again, my symptoms improved after an initial flare. I wouldn’t say that the IVIG felt like it was a miracle or that it made everything better at a concrete time. But after about three months, I was probably back to 80%, and I was still taking the prophylactic antibiotics.
Recovery and Advocacy
And then I was doing okay. I still had symptoms: the OCD, definitely the ARFID, the anxiety and the depression. But there was one day where I woke up near the end of my junior year, so almost a year and a half later, where I realized that I didn’t feel sick anymore. And it wasn’t sudden-like I woke up and it was a miracle, I was better-it was more that I realized, “Wait a minute, I haven’t felt the way I used to feel in a really long time.” I’m not sure if it was the IVIG, the antibiotics, time or if they all contributed, but by the end of my junior year, I declared myself better.
And that was really the end of that journey. I still have minor OCD, which I’m medicated for, and I still take an SSRI (which I also took before the PANDAS symptoms started). That was half of why a lot of doctors said, “Oh, well, it’s just anxiety, because clearly she’s had anxiety before, and that’s just what this is.” And they didn’t really seem to care that it felt different to me or that I couldn’t really articulate why I felt so depressed and anxious. I still take some medication, and I still have some trouble eating. I’m still very selective in what I’ll eat, but I’m actually a passable weight now. It’s still a little bit of a struggle. But it’s nothing I can’t deal with and nothing I’m not happy to deal with based on where I was and where I am today.
In 11th grade, I started a project to create a pamphlet for parents whose children had just been diagnosed with PANDAS. And then, earlier this year, I joined the PANDAS Network Patient Advisory Committee; we’ve just been getting started with that. It’s been really great to talk with other people who have gone through the same things and are fighting for children who are so misunderstood and misdiagnosed.
My experience with PANDAS has inspired me to go into pediatrics; I want to be the kind of doctor who believes in kids. I’m more interested in primary care because I have more of a public health focus, and I’ve been really interested in health studies (my minor in college). Primary care is where my heart is, but wanting to work with sick children and their families and figure out solutions instead of just dismissing symptoms…it’s definitely a result of my PANDAS journey.