Updated: Jan 7
After eight exhausting months, I finally had a chance over Christmas break to sit down and write down some of the valuable lessons I've learned about OCD and PANS.
A google search for PANDAS/PANS a couple of months ago brought me to a page where I read that "treatment for children suspected of PANDAS is generally the same as the standard treatments for TS and OCD..."
If I've learned anything from the past almost ten years of my daughter being sick, it is that statements like that are wrong! It is unfortunate for those who have PANDAS/PANS that many doctors still subscribe to the above treatment standard. After hearing of my daughter's PANS diagnosis, her current OCD therapist (whom she's been working with since 2018) still stubbornly claimed that "well, sure, but the only treatment for OCD is still ERP (Exposure Response Prevention therapy)"… Many doctors still don't acknowledge PANS or perhaps even worse are blissfully ignorant about it. I recently had to explain PANS to my PCP, who had never heard of it.
So, I must present my family's story to you as a demonstration of why you should never listen to terrible advice like the above. You should not treat PANDAS/PANS like your "basic" OCD. And please be aware of websites with that message.
My daughter developed OCD in 2013. She was 11 years old at the time. It started with intense worry that she might harm someone accidentally. It intensified over the next few years until one fateful day during her sophomore year of high school, she became convinced that she was a monster who wanted to do terrible things to others, particularly people who meant the most to her. Unwanted obscene intrusive thoughts suddenly consumed her mind: words and images of explicit, frightening material that went against everything she believed. In a matter of days, she'd developed a severe case of OCD which revolved around moral obsessions and invisible mental compulsions. The extreme anxiety she felt from her OCD made her scared to leave her room, shower, eat, and be around any of us. She was sure she could even turn others into the terrible human being she believed she was. It was like an outside force was completely controlling her mind and body. None of us had any idea what was happening to her and that OCD could manifest in this way—most people still tend to think that OCD is about order.
Well, it isn't.
Her then therapist referred us to a hopeless psychiatrist for medication and UCLA for intensive outpatient therapy. We were convinced that she "just" had severe OCD and that the medication and therapy in combination would be the way to heal her.
And so, in 2018, she began UCLA's OCD IOP's 16-week course of intensive Exposure-Response Prevention therapy. She slowly returned to normal, and her severe OCD subsided. But not completely. During the following 2-3 years, OCD was mild-moderate, no longer debilitating, but still present lurking in the shadows.
During that time, in 2020, I started suspecting PANDAS/PANS.
"Could this be PANDAS/PANS?" I asked her PCP.
(I should let you know that PANDAS is the acronym for Pediatric Autoimmune Neuropsychiatric Disorder associated with Strep and PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome. My daughter was now 16 years old and didn't exactly fit the "pediatric" mold).
Her doctor responded: "Has she had Strep?"
Honestly, I had no idea if she did. But when she was 12 years old, she had spent Thanksgiving with a cousin who had it, so who knows?
"Well, if she hasn't had Strep, then probably no. Also, she's too old."
Her therapist had the same thought about my suspicion:
"We don't know much about it… it's a controversial subject. I believe it's overdiagnosed. But we know that therapy helps most people with OCD."
Since she did get better after the four months of therapy at UCLA, I figured that even if PANDAS/PANS were the catalysts for her OCD, it was not important anymore. I believed that the conventional treatment strategy for suspected PANDAS/PANS, treating it no differently than typical OCD, had worked.
Boy, was I wrong. We all were wrong…
Unfortunately, many doctors don't realize the problem with their mainstream PANS treatment advice: PANS is an infection-triggered autoimmune disease that attacks the brain—not a mental illness. Although the syndrome manifests as severe, sudden-onset OCD, like any other autoimmune disorder, PANS can't be cured by antidepressants and therapy. Yes, medication may be necessary to cope with symptoms, but it doesn't address the underlying disease.
Similarly, therapy can help cope with the PANS symptom of OCD. Still, it doesn't cure the brain inflammation that causes it, and forgoing proper treatment for PANS can worsen the illness. Our family learned the hard way this year that this was just the start of our daughter's fight.
A severe upper respiratory illness in March 2022 brought PANS back with a vengeance: severe OCD and intrusive thoughts that landed her in the hospital. Her anxiety reached new extremes, and she started having daily panic attacks. She developed hand tremors and noticed random muscles twitching at times, too. She had headaches. Felt lightheaded and dizzy standing up and getting out of bed. She lacked motivation. Had severe sensory issues - especially sensitivity to certain sounds. She slept A LOT. She started having body dysmorphia. Aggression and rage—opposite behavior than you would expect of the kind, empathetic, gentle human being she is. Days when she didn't want to live. And after contracting COVID in late September, she spiraled into an even darker place. After seeing multiple doctors and completing two rounds of OCD therapy (which didn't help the least), it was also in September that she finally ended up in front of UCLA Rheumatologist Dr. W, who ran all the proper tests and diagnosed her with PANS and prescribed IVIG treatments for her.
There are tests doctor's can do to diagnose immunodeficiency. One of them is testing a person's ability to create antibodies for 23 serotypes of streptococcus pneumonia before vaccinating the person with Pneumovax 23, then retesting them four weeks later. At this point, the person should have sufficient antibodies to fight those 23 serotypes. My daughter had abnormally low antibodies pre-vaccine and the vaccine didn't change that. Her IgG subtypes were also unusually low; they have been tested three times in the past six months, and each time is lower than before. She was diagnosed with Common Variable Immune Deficiency (CVID).
Any doctor who thinks you should treat PANS the same as any case of OCD clearly knows nothing about PANS. Unless someone has a mild case or is diagnosed quickly, PANS sufferers like my daughter have tried multiple medications and herbal supplements, seen numerous therapists and doctors, and most likely have a mile-long list of diagnoses in addition to OCD. And they continue to suffer, as does their family. I have met parents with kids who are borderline psychotic from PANS: one family's 11-year-old son went from happy, healthy, and functioning to refusing to wear clothes, shower, or use the bathroom. He has been stuck in bed, in his room for months.
In my daughter's case, she has continued to do her very best to comply with the therapy and medications her doctors have suggested in the hopes of getting better, but she really hasn't improved much. Whenever she gets a cold or some illness, she has a severe flare of OCD symptoms. Antibiotics seem to calm OCD slightly, but OCD is still making her life very difficult.
Only treating PANS like regular OCD is a complete misunderstanding of the disorder. PANS isn't just acute-onset OCD—as mentioned above, it is an autoimmune condition that attacks the brain. The attack not only results in OCD but in other symptoms, such as the ones I described above (and plenty of others that my daughter doesn't have). You cannot possibly fix the problems mentioned earlier by only treating PANS like "any other case of OCD."
Next week, almost five years after my daughter's extreme OCD symptoms began, she's finally getting the treatment we believe she needs. Dr. W is one of the rare medical professionals we've seen since this nightmare began who's been kind and understanding, knowledgeable about PANS, and knows how to treat it. Other doctors might say visiting specialists like him is a waste of time or even risky. But when a person is saying they want to die and are not responding to conventional medication and therapy anymore, what's the real risk in the situation?
My daughter will receive an aggressive high-dose autoimmune treatment called IVIG: an IV infusion of antibodies from thousands of healthy donors. The idea is that the IVIG will reset her immune system and stop the autoimmune attack. Stopping her antibodies from attacking her brain should stop the PANS symptoms. She will receive infusions every four weeks (each time on two consecutive days) until her OCD symptoms subside. There's no saying how many treatments she will need or if she will fully recover from PANS, but we are hopeful that she will be left with only mild OCD symptoms having little impact on her life.
During all this, I have come in contact with parents whose children are diagnosed with PANS as young as three years old. Heartbreaking. Overnight they go from sweet and "normal" little kids to what seems like raging maniacs. A mom whose daughter's name is the same as mine and just a year younger told me her daughter started seeing Dr. W two years ago and that he has saved her daughter's life. Her OCD symptoms are gone.
I am not anti-therapy or anti-medication, but based on our experience, I'm against only using these methods to treat a physical, autoimmune disease resulting in brain inflammation. Again, PANS is not a mental illness; it is undeniable that many of its symptoms, such as OCD, can be alleviated through therapy. I think most people with PANS probably can benefit from it if not too severe. The 11-year-old boy I mentioned above is a heartbreaking example of someone likely past the point where therapy would have an impact. I believe that sometimes, the proper medications can be helpful, too. They have been for my daughter. This disease is harder to live with every day than you can imagine, and if there's anything safe that might help, why not try it?
Although PANS treatments like IVIG and long-term antibiotics can be risky, in moderate or severe cases like my daughter's, I would argue that it's absurd to use nothing but conventional OCD treatments like therapy and medication. At best, someone with severe PANS who doesn't receive immune-based treatment might manage their OCD with medication and therapy for the rest of their life. At worst, that person could be permanently disabled by irreversible symptoms. Or perhaps something even worse if they become suicidal.
My family's experience with PANS is not atypical. Sadly, the only thing unusual about it is that we found a doctor willing to look beyond my daughter's OCD diagnosis and treat her underlying illness correctly. I will continue to be critical of the misguided conventional treatment strategy for PANDAS/PANS and share our family's journey through the hell that is PANS until all doctors acknowledge the severe autoimmune disease that it is. I shudder to think of how many thousands go without adequate care due to medical ignorance.