I don’t watch much TV, so when I heard rumblings of an insensitive episode of Chicago Med, it was news to me. Of course, I had to track it down and watch it. Chicago Med’s take on PANDAS has received much furor in the PANDAS community, and rightly so. Below, I’ll tell you about the episode in question and why Chicago Med & NBC should issue an apology.
I’m not sure where to start with this one. Should I highlight the daily struggle of children with PANDAS and the parents who love and fight for them? Should I unleash the deep-gut, sobbing, angry, crushed response the episode invoked in me?
I could definitely pull out the mama bear and talk about how you made so little of my family’s struggles. About how you marginalized me as just a crazy mom with a mostly normal child I’m just fretting too much about.
Instead, I think I’ll just stick with the facts, because that’s where you really got things wrong.
I think actually the best place to start is the episode itself.
The Parent Trap (aka Blame the Crazy Mom)
The episode in question, The Parent Trap, features a case involving a ten-year-old boy, Kevin, with severe stomach pain and fever. Before running a gamut of tests, Doctors Halstead and Manning ask a series of questions in order to get a patient history, which would be fine if Dr. Halstead didn’t immediately begin badmouthing the parents and the child’s doctor as soon as he left the room.
You see, Kevin has been diagnosed with PANDAS (which Dr. Halstead is apparently well-versed in, as he quickly spouts off the full name- Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections- with ease because as every PANDAS parent knows, it’s common for the average doctor to know what PANDAS is). Eye roll.
As Kevin’s mom explains, Kevin began having tics and OCD following a strep infection. Kevin’s doctor, Dr. Kravitz, “one of the nation’s top experts” on PANDAS, finally diagnosed Kevin after he had seen many doctors who were unable to determine the cause of his sudden onset of psychiatric symptoms.
Not only is Dr. Halstead well-versed in the “not even officially recognized diagnosis” of PANDAS, but he’s familiar with the child’s “quack” doctor who is known for diagnosing and treating children with PANDAS. In fact, he insists Dr. Kravitz “labels every kid’s neurological condition as PANDAS” and that Kevin is now suffering “all because his parents shopped around for a doctor willing to blame Kevin’s neurologic tics on strep, instead of admitting they most likely passed it on to him genetically.”
Dr. Halstead determines the cause of Kevin’s stomach pain is an infection caused by long-term antibiotic treatment for PANDAS and insists surgery is needed immediately, to which the parents insist on checking in with Dr. Kravitz before consenting to. You can imagine this infuriates Dr. Halstead, who clearly has a God-complex, but not to worry, Chicago Med writers will vindicate him and show us that the parents (namely the mom) were crazy all along.
As the episode progresses, we find out that Kevin’s mom actually has OCD herself, at which point, Dr. Manning concludes that Kevin’s OCD is the result of a genetic inheritance, and that treating him for infections has been a mistake. The parents eventually consent to surgery to repair Kevin’s stomach problem.
Where Chicago Med went wrong
Now that you’re caught up, let’s break down where Chicago Med and NBC went wrong, and why they should issue an apology to PANDAS parents everywhere.
PANDAS is not a “made up” diagnosis.
Believe it or not, there are tests that can help to back up the clinical diagnosis of PANDAS, and the closely related PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). Because PANDAS is specific to strep infections, let’s talk about that.
There are a couple of tests that can be run to check for strep antibodies, the Anti-DNase B Strep Antibodies and the Antistreptolysin O Ab. When these numbers are heightened long after an obvious, active strep infection has come and gone, this is a sign the body is still continuing to fight the infection. Only now, the infection has become systemic and has likely begun infecting and attacking the brain, also provoking the immune system to attack brain tissues, resulting in… ding, ding, ding, behavioral symptoms that manifest as PANDAS.
If a doctor is treating a child for chronic strep with long-term, prophylactic antibiotics, it is likely because lab work has shown elevated antibodies, indicating that the child is still fighting an underlying strep infection.
In addition, a newer test, called the Cunningham Panel, actually measures antibody titers against neuronal antigens present in the brain. It helps identify the level of autoimmune antibodies associated with Neuropsychiatric Disorders and the capability they have to stimulate and trigger neurologic behavior. Elevated levels of these antibodies indicate that a child’s symptoms may be due to an infection-induced autoimmune response.
It is thanks to “quack” doctors like the fictional Dr. Kravitz that children with PANDAS can get the help they need by addressing these underlying infections, and, in my experience, responsible doctors (and certainly one who is a PANDAS expert) are careful to prescribe strong probiotics to protect healthy gut flora through antibiotic treatment.
(By the way, I do think it’s important to mention that symptoms of PANDAS and PANS can be due to any number of infections, including strep, mycoplasma, mold, and more.)
PANDAS is a whole hell of a lot more than tics.
And I don’t say that lightly. For some families, PANDAS is absolute hell.
While Kevin’s parents insist they’re worried about him because “kids at school are starting to notice” his tics, PANDAS parents know that tics may be the least of our concerns. And while the severity of tics can vary, more concerning symptoms may include:
- Episodes of rage, during which parents may fear for their child’s or others’ safety.
- Suicidal thoughts or behavior.
- Severe OCD, which may prevent a child from living a normal life (we’re not just talking a little hand washing when anxious feelings arise).
- Bipolar Disorder (to name a few)
Let’s not minimize the suffering of children with PANDAS and the parents, siblings, grandparents, teachers, and friends who suffer with them, fight with and for them, and experience the heartbreak of losing a child to this disease (because that’s literally what it feels like when your child has a sudden onset of psychiatric symptoms- you have lost the child you once knew, and he has been replaced by someone else entirely. Someone who suffers from mental illness, who may not be able to show or receive love or affection, who may become violent or insolent, or who becomes downright difficult to live with).
PANDAS is not genetic, but genetics may be connected.
Here is the moment I get real raw and honest with you. When I share my deep-hidden struggle because the world deserves to know the truth about PANDAS: I have it too.
I know. I’m not a child. And the diagnosis is supposed to be limited to pediatric patients only. However.
Once I took my child to “one of the nation’s top experts” in PANDAS (yeah, we’ve been lucky enough to find one of those “quack” doctors), and we began discussing my son’s symptoms- that list up there? Yeah- he’s had every one of those symptoms.- and family history, lo and behold, it became obvious I myself had been suffering from symptoms of PANDAS most of my life.
Though I’ve outgrown and healed many of the symptoms I struggled with as a child (extreme anxiety, OCD, defiance, and poor impulse control), as an adult, I have continued to suffer from neurological symptoms, they just grew up with me: migraines, anxiety, depression, and others that had just become my norm, but I now realize were symptoms of PANDAS.
“So what? You just proved it’s genetic,” you might say. Not so fast. A good doctor will dig deeper than genetics. So while I may have passed on my faulty genes that made me sensitive and susceptible to infections and a damaged immune system (sorry about that son), I also passed on my infections.
Those strep tests I mentioned? We ran them on me too. Guess what? Heightened strep antibodies across the board. I’m thinking this episode of Chicago Med would’ve been much more realistic if the smug doctor had run strep antibodies tests on Kevin’s mom, then they both could’ve received treatment and been free from OCD.
Some of us have been fortunate enough for that. I’ve learned the truth about PANDAS and related disorders, and that they’re caused by infections. And you know how to get rid of infections? Antibiotics? Maybe. But even better- major lifestyle changes like eating real food and cutting out all the stuff I used to love- sugar, gluten, dairy, and a plethora of nasty food-like creations you’ll find on every grocery store shelf. Strengthening the immune system with nutrition and supplements (here is where you’ll find some of the most helpful ones) has helped my son and I overcome the worst of our symptoms, and we continue to work on the rest.
When PANDAS is treated as a “fake” illness on mainstream television, parents don’t get the information and help they need. Had I not continued digging for information and fighting for my son, we wouldn’t both be much better off these days. And my guess is there are lots of parents suffering from similar symptoms as their children with PANDAS, not because of genetics, because of underlying infections and lifestyle factors, and those children and their families could actually feel better and get the help they need if there wasn’t so much damn misinformation about PANDAS.
IVIG is not a placebo with no therapeutic merit.
Oh Dr. Halstead with the God-complex and superiority and smart comments. The writers of Chicago Med really had some fun with you.
Obviously, in made up worlds where doctors sleep with and cheat on each other and occasionally practice medicine (I’m only guessing based on the brief single episode I’ve now watched), one doctor’s opinion of a single treatment that has proven beneficial in the real world is gospel truth.
I personally don’t have any experience with IVIG, but I do have personal friends whose children have been helped and even fully recovered using this treatment.
Intravenous Immunoglobulin therapy consists of IV infusions of immunoglobulin. Immunoglobulin, part of the blood’s plasma, contains antibodies. It can be separated when people donate blood and then transfused into those with immunodeficiency. The antibodies help to bolster and reset a patient’s immune system so it can begin functioning normally and fighting off infections.
IVIG is used to treat a variety of conditions, but it has gained popularity in treating PANDAS, and, by the way, has been proven beneficial for treating the symptoms associated with PANDAS.
IVIG is not without risks or side effects and it is still somewhat controversial in treating PANDAS, but it does have therapeutic merit for some patients, and it’s certainly not a placebo.
Dear Chicago Med and NBC
An apology would be nice. In fact, it’s totally warranted. You either blatantly misled viewers with false information (and with your advertising dollars on the line, we understand why you might do that), or you ignorantly stepped on the toes of the life experiences of families effected by PANDAS. Either way, you owe us an apology.
Your insensitive and incomplete portrayal of PANDAS did a real disservice to parents who are looking for answers for their children. But what do I know? I’m just another #crazymother who passed on my neurological conditions to my child via genetics, right?
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