May 9, 2017
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.
Dr. Trifiletti presenting at AutismOne
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?
Dr. Michael Gabriel
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.
Watch TMR’s 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.
PANDAS Awareness dessert style
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.
~ Professor
For more by Professor, click here.
Thank you so much for your article. We are 3 weeks into our horrific journey with PANDAS. Our 8 year old son is struggling big time, mostly with tics, both motor and verbal, OCD, and anxiety. We have seen an immunologist, a neurologist, and are seeing an infectious disease doctor tonight. My gut tells me though, that like you felt, long term antibiotics and psych meds are not the answer here. While they may help with this flare, the are not going to restore his immune system. We have started an intense regimen of essential oils and have cleaned up his diet, but I’m now seeking to see either an integrative medicine doctor or a homeopath, or both. We live in the New York metro area. Are there any homeopaths/naturopaths that you recommend in the area? Thank you so much! Also, if you’re open to conversing privately via email or phone, I would really love the opportunity to speak with you. Thanks!
Hi Amanda! I know that Mary Hernandez on Staten Island has a good deal of experience with sensitive kids who have PANDAS symptoms. Other homeopaths might be able to do Skype consultations.
Hello. Thank you for this write up. My son is 10 and we have been going through this tragic change in him since November – the longest 8 weeks of my life. He had Strep diagnosed Nov 12th and it was around Thanksgiving that he started having horrible intrusive thoughts ocd symptoms with compulsions and severe anxiety. He has been on antibiotics since Dec 5 when his pediatrician diagnosed PANDAS and is seeing a therapist twice weekly to do ERP – he is also seeing a psychiatrist who wants to give him Zoloft but I am looking for other options- thus found this today. I have emailed Susan Schulman and am waiting for an appointment at this time – I was thinking of starting the inositol while waiting to see her but am not sure.. I need to help my boy as you understand all too well and am praying that we got this early enough in the course to possibly break it.. I am so very sorry for all the children and parents out there who went years without an understanding of this.. all so tragic and sad. Thank you for this article – maybe we can chat one day – I live in N.J. all the best
Gina, I’m so sorry I didn’t see this until now. I’ve been in the process of moving. Have you seen Susan Schulman? I would LOVE to talk to you further. I’m sending you an email with my real contact info.
Can you give any advise on the best way to heal my son. Gage is an 11 year old boy with scary irrational fears, fidgets/ocd. His pupils are always huge because he is so nervous all the time and his face is always flushed. He had severe strep in the throat, ears, and eye when he was 8. Please any help would be much appreciated. Thank you
in my opinion all the psych who conveniently forgot to mention pandas even they know about should forced to take theree so called seoratin bulsshit medicne for what they did to famlies like mine and fired but that still not good enough because families like mine are struggling financially they should give all those they lied to money to assist them with treatments till they bleed dried poetic justice for those crap parasitic doctor who never once run a serotonin test because that is the true quack proffression science is supposed to be evidence based medicine and just because it is natural does not mean there is no evidence it depends on dosage to body weight to water solubility and quality and preparations and also if you need info or support head to pandas network.org they list of practitioners in their countries along with testing i just which dr suasn swedo for all the good she done could of said while i think or seems its rare having an infectious origin it could virtually affect anyone and when asked about it causing autsim which good knows if media covered it someone would of asked this and said its a possibility but now it is veruu well know but many autistics specialist it essentially the same thing it still not accepted as real condition what the fuck all the heartache and burnout out these families suffered just because someone wanted a slice of being immortalized or famous when she was still studying and being an adult female the prejudice in her days it makes sense the other reason that her work was diminished and discredited by males but in the earlies 2000 and especially now there should admit autism is not genitc it disgust me how autism speaks stills suggest that that is genetics
My boy is 13, struggling with PANDAS, about to see dr. Trifiletti. We live in s. Fl, acceptance of this is NOT widely spread or treated. Scared of what they don’t know, understand. Sad to have to pay so much for treatments that can be simplified and local.
Hi I’m not sure if you will even see this, bit how was your experience with Dr. Trifilleti?
My dauther has Pandas and has been doing well this past year. She now is having alot of sadness and we don’t know if it’s related. She won’t let me help her. You mentioned something in your article that really interests me and I would like to try with my daughter. “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.” I know you can’t predict if it will work for us, but I would love to know the name and dosage you used (and weight of your daughter, if it goes by weight). Any help would be greatly appreciated.
All the best to everyone on this exhausting journey. But we love our kids so much and will do anything to help them.
Homeopathy is different from allopathic medicine. You really have to find a book with a tutorial on dosing. This is the remedy: http://www.tinussmits.com/3870/saccharum-officinale.aspx, and I started with 30C potency and I believe I went up to 200C. I’ve been thinking recently, it might be worth going to the higher potencies or revisiting 200C. In homeopathy, unless you’re using very low potencies, you give one dose (usually 1-3 pellets) and see what happens. If the remedy does something good, wait until whatever got better starts to get worse again before giving another dose. Often with a remedy for chronic situations, a 30C will last a week to two weeks. There are actually many ways to dose in homeopathy and some practitioners will suggest dissolving any remedies in water to make them gentler for sensitive patients. This is why I say it is definitely worth studying up on homeopathic dosing.
Thank you very much for the information. I will look into this for my daughter. All the best to you and your family.
Thank you so much for the information on Saccharum Officinale. I’ve done some additional research and it sounds like it may be just the thing my daughter needs. I’ve checked several health stores and have been told it is only sold by prescription through a naturopath or homeopath. However, I see it online for sale, but now do not know if this is the correct item, since I’m being told otherwise. Would you be able to share if you had to purchase with a prescription or were able to purchase on your own? If you purchased on your own, would you be able to let me know where you purchased it? Any help would be so greatly appreciated. Thank you.
I was able to get it from Helios Homeopathy in the U.K. They ship all over the world. Good luck!
There are also many homeopathic pharmacies in the U.S. who carry it. See links below.
https://www.homeopathyworks.com/saccharum-officinale-pills/
https://hahnemannlabs.com/cgi-bin/htmlos.cgi/0015670.3.332497971416459829/hahnemannlabs
https://www.amazon.com/Boiron-SACCHARUM-OFFICINALE-30C-MD/dp/B00IZKZUVG
Thank you, Mary! Back when I was looking, the only places I could find it were in Europe. Psyched to see that it’s available locally.
Thank you so much!
Hi good morning I have a 5 year old daughter who has been… Let’s say half way diagnosed with pandas, by her pediatrician and basically left alone. I have been researching everywhere and everywhere and am stuck because of who treats it and what not. Or should I say who can treat this correctly. I am at my wit’s end, not only because of having to deal with all of the behavior, but to have to deal with five other children, diabetic foot ulcers risk of amputation of both feel and single mom. The BIGGEST problem is I can’t take the pain away from what my sweet 5 year old little girl is feeling and what is going on inside her. I was wondering if anyone had any opinions on Dr. Trifilleti or any recommendations PLEASE. I am told there are only a few doctors that are equipped to treat this, but yet I am finding names a few places. Please if anyone can provide me with anything I would be so grateful please
Where are you, Kendra? We got good results with homeopathy, but that isn’t the case for everyone. You want to bring down the inflammation in the brain as quickly as possible. Some things that might be helpful include fish oils and quercetin (or NeuroProtek).
I would also like this information, PLEASE!!
I’m leaving a comment here as a Mom with a soon to be diagnosed son because I’m in “I can’t sleep I need more information mode”.
I’ve been reading and reading and reading for two weeks but this…your writing…and then the well written informational comments made me feel something since our very primitive diagnosis. That there are people that DO come together and understand.
Thank you from a new but REALLY 5 years into PANDAS mom (and the symptoms & tics keep coming). 🙁
You ARE so welcome, Margaret. That’s exactly why I keep writing. I wish you a great deal of luck on your journey, and remember I was where you are now.
Thank you for this article. I am 32 (born 1985). As a young child, I was a social butterfly, almost fearless, saw everyone as a potential friend and playmate. At age 7, after getting the chicken pox, suddenly something took over my brain.
It forced me to think of all the horrible, graphic, devastating things that could happen to hurt my family and I. It made me afraid of being away from my parents, particularly my mom, in case something bad happened to them. I had trouble sleeping because if I fell asleep, the house might burn down. After seeing scary movies, I could not sleep, I had to watch for that monster, even though I knew the monster wasn’t real. I couldn’t eat food with specks on it, because what if those specks were a disease that would hurt or kill me? I would rinse my mouth for 30 minutes after brushing my teeth because any tiny amount of toothpaste might poison me. And there was so much more, too much to list here. It was all day, every day.
I did not have normal relationships–it took me until my late 20s to feel like I had real friends, although I would hang on the fringes of social groups to blend in as a “normal person.” I still struggle with intimacy–being locked in a mental prison for almost 2 decades meant that 1) I did not learn how to have healthy intimacy, and 2) I did not feel as though I deserved intimacy–otherwise, why would I have been punished in this almost supernaturally strange way, with no explanation besides something being wrong with ME?
I was very good at hiding it. Although something was absolutely torturing me from the inside, I barely trusted my own judgment that I could actually even tell when something was worth telling an adult about. Losing control over my thought processes eroded my sense of agency. If you can’t control or trust your mind–which is where decisions are made!–how can you have confidence that your decisions are good, sound, logical, or meaningful? I also worried that if I let people know that something was wrong with me, they might stop loving me–if something like this was happening to me for NO apparent reason, maybe I deserved it. And if I deserved it, I must not be a good person. And if they find out I am not a good person, they will stop loving me. And even then, before Monk made it something entertaining and amusing, I knew that ocd was not something that our society took seriously as a devastating mental disorder. And telling someone would not have done much anyway–this was mostly before P/P was published, and we didn’t live in an area with great doctors.
My parents noticed that my personality changed, but did not press very hard when I lied that I was fine. I wish, wish wish, that they had pressed more. I wish, wish, wish, that my self-confidence and trust of my own judgment had not been so destroyed that I felt able to be honest about what was going on inside. I don’t know why they did not react more when someone/something stole their daughter’s personality and mind. Maybe I was just that good at hiding what I felt was a terrifying secret.
It continued on. When I was 14, it was still so bad that I could not get my schoolwork done. I sobbed to my mother, “confessed” that something had been wrong with me this whole time, and she took me to an (incompetent) doctor who simply gave me SSRIs. The doctor did not even recommend a therapist–just drugs. The drugs numbed the ocd and I could get most things done, but I was still enduring, not living. I was able to force myself to stop rinsing my just-brushed teeth after a few minutes (even though I was still afraid of being poisoned), which felt like a miraculous accomplishment. I graduated high school, and college. I did alright, grades-wise. (I was terrified that I would lose the love that I did have if I did not perform well academically. Academic performance was a form of love that I knew I could count on–the ocd made me feel I did not inherently deserve love as a person, but dammit, I could get decent grades and people seemed to like that.) I still did not believe in myself, did not believe I deserved good things, and did not have much self-confidence. I dated some bad people because I did not believe I deserved good partners. When potential friends would reach out, I would put up a wall–I was not good enough to have real friends.
At age 23, a boyfriend of mine recommended talking to a therapist. I did, and it helped. I got off my SSRIs, started to further “confess” my inner world, and started eating a healthier diet. I still had ocd (and still do to a certain extent), but I did not feel as though my brain was being controlled 24/7. It is more just a constant awareness of my very personal contamination rules, and some orthorexia. I do not know if the continued ocd tendencies are due to inflammation/autoimmune issues that need medical attention, or just very deep ruts in my neuronal pathways that can be altered with CBT. In this intermediate time, between 23 and 32, I never really acknowledged what I went through internally during my childhood, and how scary it was, and how much it shaped the trajectory of my life. I did not really acknowledge that maybe I deserve to be loved by friends and family just the way I am.
If I were to try to get someone to understand, I would personify it. A person kidnapped a 7 year old child and held her for 16 years, and all day every day, forced her to look at horrors, Clockwork Orange-style, and told they are probably her fault. And then, he brainwashed her and taunted her that she could prevent theses horrors if she just could do a certain thing perfectly–but then rigged the conditions so she could NEVER do it perfectly. And this person still sent her to school and let her walk around, still with the cruel tapes playing in her head–knowing that no one would really understand what she was talking about if she told. They would not believe her, because this kidnapper is invisible. This kidnapper is also invisible to the child, so the kidnapped child does not know who it is, or why they are doing it. And then when the child finally told someone “hey! I think I’ve been kidnapped!?” they just gave her a drug to numb the pain of having to deal with the kidnapper at every conscious moment, and did nothing to get her away from the kidnapper. I sometimes have to personify this even for myself, so I have something to focus my anger on–few coping techniques exist to help people deal with something invisible and intangible.
I realized JUST YESTERDAY that I have PTSD from this. Of course I do. How could I not? I finally let myself feel how bad this felt–from ages 23-32, I was still afraid of the kidnapper and did not want to make him mad, so I ignored him and didn’t question him. He still had some power over me–but as of yesterday, I decided I would face him. No more. I have had enough. Yesterday, when I chose to confront it, rather than tiptoe around it, I was suddenly back there, a frightened child who did not know why she was being tortured. Alone, and feeling as if she would be alone forever. I had to leave work, I had two panic attacks, sobbed for hours, yelled, and could not eat until I actively worked to calm myself down and distracted myself with my favorite tv show for a couple of hours. I expect I will have more of these episodes before it is further in my rear view mirror.
Learning about P/P has let me realize that it is not my fault. Putting a cause to it has allowed me to externalize the ocd/anxiety, and gives me something to be mad at, and blame, other than myself. And if we can understand the cause, maybe we can prevent this from now on. This should never happen to anyone. I mourn for the years of healthy development I lost, the squandered academic and professional potential lost from not believing in my abilities (which are actually pretty dang good!).
But when I am not mourning, I feel optimistic. When I am not angry at our world for creating the conditions where this would happen to an innocent child, or mad at doctors for not listening, or crying for the child that I was, I feel joyful. I have a figure to fight now, and it doesn’t stand a chance. I know, because when I was dating an abusive boyfriend, I found a glimmer of the real me that was still inside–the person I was before P/P. This boyfriend knocked almost all of me down, but that part still stood. And that part gave me the strength I needed to leave him. I realized that there was still a part of the old, confident me in there somewhere. But I felt like I couldn’t confront the mental suffering I went through for so long, because it was not external from me yet–it was my problem, my fault, it was me. And now that I am no longer blaming myself for this disorder, now that I can externalize it in some way, I feel like I can fight against it the way I fought against him. I cannot change the past, but I can choose how I react to it. And to wrest control from the invader enough that I feel as though I even HAVE a choice in how I react? It feels amazing.
I will learn from this experience and hopefully grow from it. I am grateful that I have dealt with it was well as I have. I will be grateful for the moment when I saw an article about something called “PANS”, the knowledge of which enabled me to tell myself the truth, that this trauma from my childhood and adolescence was Not. My. Fault.
In managing my current, much more mild symptoms, I take fish oil, and I am going to try out CBD oil and see if that helps (hemp powder seems to improve my mood). I will try to find someone to help me with CBT. There is still the strong, social butterfly version of myself inside, and it is getting stronger every day. I am glad I have memories of a time before this disorder that I can refer back to as a guide.
I have not seen many P/P survivor support groups for sufferers who have grown into adulthood, particularly for those who went through this without treatment. Your page was pretty much the only relevant google result for “PANS PTSD”. So thank you for acknowledging that it is a thing, and thank you for your persistence in this fight. If I become a mom someday, and my child suffers from something like this, you can bet your ass I will fight as hard as I wished someone would have fought for me back then.
Oh, Katie, your post breaks my heart. The parallels between you and Trinity are unmistakable. When she was three years old, she could talk to ANYONE without any self-consciousness at all. We went to an “interview” when she was three years old (really more of a play session) at the Montessori school she ended up going to later on. She strode confidently out the door saying goodbye to the headmistress who commented, “No shyness there!” That little girl LOVED pre-K (two years), with not a shred of separation anxiety. After her (brief) bout with strep throat, in kindergarten she was suddenly the kid who clung to Mom and would cry when I left. In a pattern that continued for years, she started having anxiety-related illnesses that would keep her home. Unfortunately, we had a baby who died just as she was starting pre-K and all her personality changes were attributed to that, even though they really happened a couple of years later. She spent years in therapy that didn’t change anything. I’m so glad it was helpful to you! I’m amazed that you had the awareness to figure this out. There’s so much that I would do differently if I could. I think that there are no survivor groups because it has only been recognized for such a short period of time, and many of the sufferers are still suffering in adulthood. I think most of the adults still don’t have any idea what happened to them. I would love to hook you up with my daughter. She could really use someone to talk to about it. May I give her your email?
Be gentle with yourself. The PTSD is very real. One thing that I have found that can help are Emotional Freedom Technique (I used the version found in Nick Ortner’s book The Tapping Solution. If you need help implementing it, my niece Kelly Howe does Skype sessions that are AMAZING. This is her website if you’re interested: https://www.kellyhowecoaching.com/.
Thank you for your well-written and thoughtful article. Just one question. If antibiotics can return our children back to their former social and happy selves, shouldn’t we give them every known opportunity to get there? I understand that months of antibiotics is not ideal, but PANDAS is a nightmare wreaking havoc on our kids’ brains that needs immediate medical treatment. Having already seen one of my PANDAS children healed and my other, more serious, one almost there because of antibiotics (in combination with several supplements), I can not support witholding this proven cure.
I would NEVER presume to suggest that I know what the best treatment is for every child, and I know that there are situations where antibiotics have made a tremendous difference in a child’s life. But Dr. Swedo herself confirmed that which I had suspected, children treated with antibiotics are susceptible to relapse with any subsequent infection. She herself advocates not just long-term antibiotic use but LIFELONG prophyalactic antibiotics. That was not what I wanted for my own daughter if I could possibly help it, especially as I strongly suspected that all the antibiotics in her early life were instrumental in getting us to the point of despair in the first place. Trinity is 18 now, takes no medications, and is not susceptible to relapse with other infections. I have no regrets about the direction I took, other than a tiny regret that she really didn’t have a sense of the enormity of her illness. Though Trinity knew it intellectually, I don’t think she really believed that her behavior had nothing to do with her actual personality until she saw the film.
I’m confused about the vaccine stance. I have 2 diagnosed pandas, very similar to Trinity’s signs. 9 yo daughter vaccinated up to 18 months. 5 yo son not vaccinated at all. Both pandas kids. If I had it to do over again I would not vaccinate, but seeing in my family one of each leads me to believe there must be a different or more than one thing that tips their genetics toward PANDAS. my 15 and 12 year old do not have PANDAS. Just food for thought.
Oh, I don’t think that vaccines are REQUIRED for inducing PANDAS in genetically susceptible kids, but I sure don’t think they HELP the situation. Did your kids get antibiotics around birth? I think that that the antibiotics given for strep B at birth are probably playing into the situation. Also, Tylenol consumption is going to matter as well. Basically, these kids have very active immune systems, often because their detoxification pathways (especially methylation) do not work as well as most. There are lots of things that can cause immune activation that may tilt them toward any immune dysregulation, it’s just that vaccination is the single biggest thing we do that does it. In a country where they vaccinate a lot less, they might see that an increase in immune-mediated illnesses is driven by a different type of exposure.
The lost years are the most painful. My daughter lost over 5 years of her childhood and she is coping best she can, we do alot of things that were meant for younger children and don’t care how we are viewed. The most painful is the loss of friends. She was left with no friends, no social circle, no where to go. She was left in the dust by her peers, and we have not been able to rectify that. I pray that college will afford new opportunities next year, but right now she is pretty isolated socially and it hurts to watch.
*sigh* BEFORE PANDAS, I described Trinity as “the most social being on the planet.” She can’t imagine being that person anymore. She has friends, but I don’t know if she will ever get that element back like she would like.
Thank you for taking the time to share Trinity’s story (and yours as well). I’d like to seek out a physician familiar with PANS/PANDAS in our area. Any advice on where to go for more info on the syndrome/disorder/disease/mechanism? Our daughter (11) has always been susceptible to strep, as have I my entire life. Your train analogy was really very spot on. Is there more information on an online support group or conference you could share?
Again, thank you for sharing. I will be sharing as well.
Thank you for writing this wonderfully thoughtful, sensitive and insightful article about our amazingly successful event to raise PANDAS/PANS awareness in the local medical community!!! So glad that you and ” Trinity” could be there! The “bad ass moms” from Staten Island will continue our efforts to keep more kids from losing more of their lives!! Education is so important. My son’s sudden onset of PANS came about when they were giving the swine flu vaccine in the NYC public schools 6 years ago. He did not get the vaccine, but within 20 minutes of the other kids returning to the classroom from the nurses office, he had tics non-stop (none before) and then anxiety turned to full blown paranoia. There was no question what triggered his reaction. Also no surprise to me that PANs flares shoot up in October when flu vaccine season starts. We were so happy to find healing with homeopathy as well.
I was trying to figure out how to work out mentioning you, Christine Mitsogiorgakis, and Giulia Miller in the body of the text, but I was so caught up in the narrative that I didn’t have anything left! But THANK YOU for being the Staten Island Badass you are!
Your article was a huge thank you! Much love for your kind words, and exposing your journey to help others.
Lets stick together as much as we can to help our kids and support our doctors and maybe even get more doctors on board. Im hoping that event will wake up our hospitals!
I was SO impressed that you got so many medical people in that room. I guarantee they knew a LOT more when they left that room than when they arrived! <3 I forgot to mention HOW MANY TIMES through the evening that doctors said, "The parents are way ahead of the medical community on this."
beautifully written article. will share. thank you, Professor.
Did the recent paper from Yale, “Temporal Association of Certain Neuropsychiatric Disorders Following Vaccination of Children and Adolescents: A Pilot Case–Control Study”, come up at all in the discussion or is Dr. Swedo just ignoring it?
“Subjects with newly diagnosed AN were more likely than controls to have had any vaccination in the previous 3 months [hazard ratio (HR) 1.80, 95% confidence interval 1.21–2.68]. Influenza vaccinations during the prior 3, 6, and 12 months were also associated with incident diagnoses of AN, OCD, and an anxiety disorder. Several other associations were also significant with HRs greater than 1.40 (hepatitis A with OCD and AN; hepatitis B with AN; and meningitis with AN and chronic tic disorder).”
http://journal.frontiersin.org/article/10.3389/fpsyt.2017.00003/full
Note: Dr. Leckman (Yale) is one of the authors and is mentioned in this Boston Globe article on PANDAS https://www.boston.com/culture/health/2012/10/27/the-pandas-puzzle-can-a-common-infection-cause-ocd-in-kids .
Also, I can’t help but wonder if Dr. Schulman’s PANDAS clusters are a result her pro-vax stance and too many flu shots. To make matter worse, NY state has a fairly strict policy of vaccine exemptions (religious exemptions exist but are hard to get). And, NY state, until recently, required even preschoolers to get the flu shot.
Hi, Lisa! Great questions… She ignored it. No mention whatsoever of temporal associations to vaccines. Thanks for the citation!
I live down the street from the community she serves, and I have to say that in general the vaccination rates in that community run quite low. I think the yeshivas in the area take religious exemptions, no questions asked. So even though Dr. Schulman applauded Dr. Swedo’s comments on vaccines, I would be really surprised if she pushed flu vaccine hard.
Dr. Schulman is a strong believer of vaccines and to my knowledge does not grant exemptions to her patients.
She would not be unusual in that regard. In New York State almost NO ONE grants a medical exemption, no matter how often they see the damage resulting from our way over-zealous vaccine program. I get it. It’s really hard to realize that after all your expensive years of training, not only have you not been HELPING the people you treat, you’ve been actively hurting many of them from day one.
Thank you, Professor, for sharing yours and Trinity’s PANDAS story with us, and shedding light on this not-so-rare but little-known disease that conventional medicine doesn’t seem to have a handle on.
Great article….but what kind of picture are you using ? I click on the link and the photo in the upper left hand corner is a female teacher with thigh highs. heels, and garters writing on the chalkboard!! Is nothing sacred?? Why would you use this image in such an important piece? I will not be sharing this. The fact that you use porn completely takes away any good from this article.
It’s hardly “porn.” It’s my avatar and is on every piece I’ve written on this site. I don’t love it, but my co-workers decided it was the best one we could find to express different sides of my personality. That was about five years ago, though, so it may be time to revisit.
Totally agree Vicki! I can’t share such a serious article with such a ridiculous pic.