PANDAS: The “Gift” that Keeps on Giving

Last Tuesday night, my 18-year-old daughter “Trinity” and I attended a screening of the new documentary My Kid Is Not Crazy at Staten Island University Hospital. The film is about children who suffer from pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections, or PANDAS for short.

Unlike most people, Trinity and I are very familiar with PANDAS. Though she was never formally diagnosed, it essentially ruled our lives from the time she was five at least until she was nine when I first read a description of a PANDAS patient in Dr. Kenneth Bock’s book Healing the New Childhood Epidemics: Autism, ADHD, Allergies and Asthma and thought, Holy shit! That’s Trinity!

You might be thinking, Eh, so what? She was reading the book already. She suspected something. But I wasn’t reading the book because of her; I was reading it because of my son’s apraxia. It was completely by accident that I discovered similar roots for my daughter’s oppositional and obsessive behaviors.

PANDAS is essentially brain inflammation—autoimmune encephalitis (though there is some discussion about whether it is truly “autoimmune” in the early stages)—that can cause bizarre behavior in children, including obsessive and compulsive rituals and thoughts, tics, separation anxiety, panic attacks, uncontrollable rages, and sleep disorders. We know that vaccination can trigger autoimmune encephalitis  in genetically predisposed children (indeed, many argue that it is responsible for a good chunk of autism cases), but in the case of PANDAS, the immediate trigger is an ordinary strep infection, often strep throat. Though the official definition involves sudden onset of symptoms following a strep infection, there is evidence now that, at least for many, repeated strep exposures may occur before the actual development of PANDAS.

To say that the film was an emotional event for me and Trinity would be to severely understate its impact. Since Trinity’s recovery from the worst symptoms of PANDAS, we have spent most of our time just surviving the fallout and trying to catch up on the lost years. Tuesday night was the first time we really faced the emotional devastation of that time period. Also for the first time, Trinity was seeing the disorder (Dr. Susan Swedo, who first recognized PANDAS, calls it a “disease”; Dr. Rosario Trifiletti, who runs The PANDAS/PANS Institute, calls it a “mechanism”) from the outside rather than the inside, where it was all too personal, and what she saw was positively horrifying.

It was impossible—at least for me—not to feel deeply for the children on the screen. At one point, I broke down in sobs during an interview with a child with severe separation anxiety who was taken from his parents and isolated in a psych ward where he was punished for his involuntary behavior by being kept in darkness. I can only imagine what it was like for my daughter to know she was those children. I think we both felt a profound sense of gratitude that it never got that far for her.

In the film, Dr. Swedo discussed the traumatic impact PANDAS has on parents. Truly I know where she was coming from—yes, PANDAS-associated complex PTSD is real—but she implied that it might even be worse for the parents than the children, and that I absolutely cannot agree with. I’ve been that parent, and I wasn’t crying for the parents on the screen. I was crying for the years of childhood that were ruined for those children, for my child’s lost years that we will never get back.

It was also a little bizarre for us to be watching the film at a hospital with large numbers of medical staff in attendance; the term “in the belly of the beast” comes to mind. The film emphasizes the conventional medical approach to treatment—if anything about something as “controversial” as PANDAS can ever be considered “conventional.” Dr. Swedo is a Branch Manager at the National Institute of Medicine and says repeatedly in the film that she just never imagined she would be involved in researching something that other scientists and mental health professionals (with undeclared “potential” conflicts of interest) would or could contend does not exist.

I believe her. She is steeped in the conventional medicine paradigm. If it were not for the fact that she noticed that strep infections trigger OCD in some children, she would probably never have encountered controversy in her career. But she did notice, and like so many other doctors who notice things that run counter to conventional thinking, she found herself smack in the middle of a medical controversy. And to her credit, she is fearless in taking on her detractors publicly.

I felt for Dr. Swedo because I know she is doing the very best she can to help children that most of the psychiatric community would be likely to throw labels and psych meds at, and abandon to psych wards when those didn’t work. Indeed, most of the children in the film spent years on various psych meds with no improvement in symptoms before their parents and/or doctors understood the medical underpinnings of their children’s bizarre symptoms. And those (often very expensive and frequently not covered) medical treatments do help those children regain much of what they lost, at least until the next flare. But high-dose steroids, long-term (at one point in the evening, Dr. Swedo suggested “for life” might be appropriate) antibiotics, intravenous immunoglobulin (IVIG), and plasmapheresis are not without risks and complications of their own.

Between the film and the panel discussion afterward, attendees chatted over cake. Several other parents and I noted that the film makes the case for insurance coverage for the “heroic” medical interventions that often help make the patient feel and behave much better, but doesn’t comment on the fact that it’s just not practical for every PANDAS patient to receive treatments that start at $10,000. Recent estimates suggest that PANDAS prevalence is much higher than originally believed, about 1 in every 200 children in the United States. And these expensive treatments are not cures. These children can remain susceptible to relapse from casual encounters with strep, or even other types of infectious disease.

Once again, we see the calm acceptance in the medical community of permanent serious disability, complete with the attendant exorbitantly priced pharmaceuticals to ameliorate symptoms, and the assumption that the immune dysfunction underlying the condition cannot be permanently resolved.

I don’t buy it.

I’m a strep A carrier. Strep A is what killed Trinity’s brother within two days of his birth. While I was relieved to know that there was a physical basis for my daughter’s bizarre behavior, I was more than a little horrified at the cause and the proposed solutions. Frankly, I think the large doses of antibiotics I received around Trinity’s birth (for group B strep and mastitis), in combination with the full-dose-of-mercury shots she got the first year of her life, likely set her immune system and her blood-brain barrier up for the disaster of PANDAS. While that is certainly better than what happened with her brother, you might imagine I was not eager to sign her up for further antibiotics, probably years’ worth.

I was also pretty sure back in 2008 that I would have a great deal of difficulty finding a pediatrician in Brooklyn to take me seriously. I’d already been through that wringer with her younger brother’s allergies, gut issues, and apraxia. (He hasn’t ever had a formed stool? Give him more fiber!) Chances were really good that I was going to have to figure out this too on my own.

For one thing, Trinity’s presentation wasn’t “standard.” She had no tics, and no apparent OCD. What she did have were obsessive thoughts  she could not control at all. For instance, she would get anxious while doing homework, have trouble reading a particular word for instance, and we would be in full-on meltdown, complete with blinding rage, within 15 minutes—no matter what. It often took more than an hour of screaming and/or throwing things in her room in order for her to calm down enough to proceed.

I likened it to a train on a railroad track. There was just one way to go. Once she was on that track, there was no getting off it until the train crashed at 150 mph. Every time.

The other thing that would probably convince medical personnel we were dealing with “ordinary” anxiety and oppositional defiance disorder (ODD) rather than PANDAS was that, while I could document a strep throat infection, I could not document the “abrupt onset” of symptoms that Dr. Swedo insists is crucial for a PANDAS diagnosis. Trinity was already seeing a play therapist for anxiety due to her younger brother’s death, and for the same reason, I was not at my peak observational capacity at the time she had strep throat. (Given her brother’s death from a strep infection, you can imagine the anxiety I experienced when Trinity tested positive.) I did notice when Trinity started kindergarten a few months later that the child who was so eager for school at three that she didn’t even bother to wave when I was leaving was suddenly unable to let go of me and would cry inconsolably after I left. What on earth had happened to my child to make her so much more anxious than before?

So, finally having an idea what was going on in Trinity’s body, I began researching natural ways to bring down the inflammation in her brain and enable her to function. I found a list of supplements that Andy Cutler recommended for OCD and anxiety and started giving several of those, along with high-dose fish oils, to her every day. I also gradually added digestive enzymes and probiotics (being careful to avoid strep strains) to address the accompanying gut issues. Immediately, things were better. Literally overnight, we could get through homework without huge derailments. A few weeks later, the anxiety wouldn’t even begin, much less escalate.

Eureka! For a while, I could breathe, and we all got a significant reprieve. Several months later, however, I started noticing an occasional return to the same sort of major escalations over trifles. I was baffled. Why had it stopped working?

It turned out that Trinity didn’t yet have much self-awareness around how she felt. She hadn’t noticed how much easier her life had become with the supplements. All she saw was My mother isn’t happy with me the way I am, and she makes me take pills to change me. She would tell me, “This is just the way I am!”

She had stopped taking her supplements in an effort to prove to me that she was fine just the way she was. She told her father what she was doing, but he didn’t tell me. So, unbeknownst to me, she was hiding pills all over her room, and her behavior was rapidly devolving, sparking more than a little desperation and PTSD in her mother.

Even though I eventually discovered what she was doing and talked her into taking them again—at least when I was actively observing her, I had a little meltdown of my own when I cleaned her room, in order to sell the house after her father and I split up (bet you saw that coming), and found so many wasted pills. Each of those pills represented so much pain that could have been averted.

I still wasn’t ready to throw in the towel and seek out long-term antibiotics, however. I decided to see a homeopath who specialized in medically complex kids. A good friend’s son with autism was doing very well with him. His first remedy gave us another significant reprieve. After several months, though, while the changes held, Trinity stopped improving, and the second and third remedies didn’t do anything. I came to believe that the single biggest block we had was that she didn’t really believe that I loved her and was truly on her side. I came across a remedy that had as its keynote a fear of not being deserving of a mother’s love and decided to try it.

Shortly after she began that remedy, Trinity came to me sobbing. She was so sorry for her previous behavior because now she knew that I had loved her all along and been trying to help her and she had fought me every step of the way. The remorse was so intense it was hard to witness, let alone feel, but it did bring a lot of healing in its wake.

Other remedies have come and gone, but that remedy was a major turning point in our lives—and our relationship. So much so, in fact, that her teenage years, the bane of most parents’ existence, have been the best years for us as mother and daughter. We’re a team now, and I suspect we always will be. I would love for us to be the first mother/daughter team in The Amazing Race as soon as she hits 21.

While I think there are few doctors on earth who would even consider diagnosing Trinity with PANDAS today, she does retain some OCD-like behaviors and some high-anxiety episodes. I think if we could get her really physically healthy, those too would fall away. We found out during the panel discussion following the film that there was a doctor virtually down the street in Brooklyn who would have diagnosed her with PANDAS all those years ago (but who would have prescribed at least short-term antibiotics, so double-edged sword there).

Dr. Susan Schulman is a pediatrician affiliated with Maimonides Medical Center  where she sees a primarily Jewish population. Back in 1998, she had just remarked to a colleague that OCD seemed like chicken pox because it would pop up in waves in her patients just like chicken pox did. That didn’t make any sense according to conventional thinking about OCD and mental health in general. But shortly after, Dr. Schulman read a paper by Dr. Swedo, and a light bulb went off. She called Dr. Swedo saying, “I think I have a hotspot of your ‘rare’ disease!”

After treating PANDAS for nearly 20 years, Dr. Schulman thinks it is much more common than the 1 in 200 number because she recognizes children who have milder forms and may never develop the full expression of disease as defined by Dr. Swedo, yet benefit from a short-term round of antibiotics. I appreciated her mentioning that because I have come to believe that there are many less-affected individuals in the population who are not getting the help they need. Dr. Michael Gabriel of the PATH Center on Staten Island also mentioned that the prevalence is much higher than 1 in 200, and that it is particularly high in the autism population, which won’t be a surprise to our readers as we had over 2,000 people registered for our online PANDAS conference.

I was grateful to Dr. Gabriel for mentioning the autism connection as, other than Dr. Trifiletti saying he would be speaking at the AutismOne Conference this year, it was the only mention of the other “more common than we think” condition with a connection to autoimmune encephalitis in children. As Dr. Swedo mentioned, a genetic predisposition is a requirement in order for a strep infection to develop into PANDAS, which is why it doesn’t happen for most children. But what genetic predisposition exactly?

Dr. Schulman is convinced that such a predisposition exists in much higher concentrations in Jewish children. She mentioned that the other population that seems to have a high concentration is people of Irish descent. I am Irish-American, and I have long suspected this. In fact, I suspect that the disposition may not be “genetic” in origin so much as “epigenetic,” with the Irish Potato Famine of the 1840s and the Holocaust leaving serious epigenetic imprints on survivors. One thing that was mentioned, either in the film or discussion or both, but I was unable to verify, is a known correlation between a particular gene or set of genes in the HLA region that is known to convey risk for autoimmune disease and the development of PANDAS. That intrigued me because we know that autoimmune conditions occur at much higher rates in the families with children with autism than the general population. So could it be that the same or similar “genetic predisposition” that leads to PANS/PANDAS may lead to autism under different triggering circumstances? Or is there an even a stronger link between the diagnoses? Are they simply different manifestations of the same mechanism?

Which brings us to the elephant in the room, not mentioned until the very end of the panel discussion by Dr. Trifiletti, who has clearly reached a stage in his career where he calls things as he sees them and damn the consequences. Dr. Trifiletti said something along the lines of “I’m going to stick my neck out again and say that I think vaccines are a factor in the development of PANDAS.”

Dr. Swedo—remember she’s still a Branch Manager at the NIMH—immediately rebutted as strongly as she could, saying not only was she convinced, due to a lot of data (involving a study of 150 children with autism matched with controls), that vaccines had nothing to do with PANDAS, she also believed that it was incredibly important to vaccinate children with PANDAS, as they are at risk of relapse with any sort of infection. I haven’t seen the study she’s referring to, but I find it hard to see how a mere 150 kids with autism matched with controls is going to reveal much at all. Chances are really good that in both populations, vaccination rates are quite high because vaccination rates are quite high in the general population. Getting any sort of useful information out of that seems remote. It’s like trying to assess the effect of smoking on lung cancer rates when 95% of the population smokes two packs a day, the people with cancer and the people without. The proportion of the people who smoke two packs a day being similar in both groups when the background rate is so high would say nothing about the effect those two packs a day had on the group that developed cancer.

So while Trinity and I were thrilled to see the film and the discussion that followed, and awestruck by the Staten Island Badass Moms (not an actual group, just the way I think of them) who made it come about and showed up en masse, we were a little disappointed at the way the evening ended. In fact, while I was thanking Dr. Gabriel, Dr. Trifiletti, and Dr. Schulman for their comments, Trinity was waiting patiently for an opportunity to talk to Dr. Swedo. I asked her what she was going to say, and she waved me away. Turns out, she was challenging Dr. Swedo (gently) on her vaccine position!

We don’t think Trinity got anywhere with Dr. Swedo, but you know I was proud of her for trying. What we’d love to see is everyone who knows something about PANDAS and autoimmune encephalitis in general taking a step backward in order to see the big picture, how all this fits in with other things we know about the neuroimmune system. The way we are living our lives today is having tremendous long-term impact on the neuroimmune systems of our children, and not for the better.

In the car on the way home, Trinity and I discussed how glad we were that we went. Among other things, the evening had made us both realize that the end of symptoms didn’t mean that Trinity had healed from the experience. As one of the girls in the film said (while looking healthier than we’d ever seen and driving!), now that she was better, she had some anger about the lost years and she didn’t know how to let that go. I’m not sure either, but I do know that I’m going to do everything in my power to help Trinity heal, to make sure that PANDAS doesn’t get to take any more of her life away.