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PANDAS is the Real Parent Trap

April 25, 2018

 

Last night’s episode of Chicago Med, “The Parent Trap,” was aptly named, although not for the reason the writers intended. It focused on the parents of a child diagnosed with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infection), a devastating condition most parents, and even many doctors, have never heard of. The episode could have served to raise vitally needed awareness. Unfortunately it presented a biased and inaccurate portrait of what these children and their families are going through. Makes for good TV, but not even close to reality.

 

The “trap” parents of children with PANDAS find themselves in is a medical system where failure to accurately diagnose the condition is common and insurance coverage for treatment is nearly absent. This fictional betrayal described the parents as “doctor shopping” and painted a picture all too many moms, whether their child has PANDAS or not, can relate to: that of the hysterical mom who is treated with condescension by the physician for her ill informed, unscientific ideas of her child’s health. It is an insult both to mothers and to doctors. A good physician recognizes that parents know their children best and listen and show compassion and respect. The physician character Will unfortunately not only treated his patients poorly but suggested unethical and illegal behavior to his fellow physician (giving the patient fake IVIG and lying to the parents). Compelling fiction but not true to life.

 

Parents of children with PANDAS often do see several doctors before receiving their diagnosis. It is not because they are, as this portrayal states, “doctor shopping.” Sadly, due to lack of education about PANDAS in the medical community, these families endure misdiagnosis and delayed treatment for months or years while they watch their child’s health disintegrate. They are often told the symptoms are their fault for not appropriately disciplining their child or that they are worrying over nothing.

 

The child’s character did not show what a child with PANDAS experiences. He sat calmly while an NG tube was threaded through his nose, showed no distress when his parents left his side, and displayed only one mild tic. Here is the reality of a child suffering with PANDAS: multiple tics at the rate of over a hundred a minute at times, crippling OCD, anorexia, separation anxiety that prevents them from attending school, decline in motor skills, insomnia that can leave them awake for days, fear at night so bad even adolescent children sleep in their parents’ bed, uncontrollable rage, severe problems with memory and attention, urinary incontinence, depression and even suicide.  The only word many of us can think to describe it is, simply, hell. Onset is often rapid. One day they’re fine and literally overnight they change completely. I want you to look at your child laughing and playing and rosy cheeked and healthy. You tuck them into bed and the next morning they’re gone. Replaced by a child you don’t recognize. A child trapped in a body and mind they don’t recognize either, suffering terrible symptoms they can’t control or understand. Everything they once loved to do, the friends they once played with, the places they once went, now slipping away. Their world a small and frightening place where they survive rather than live.

 

 

The writers took creative license with the medical facts surrounding the condition. The patient’s character was reported to have been on three antibiotics for a year for “long term prophylactic antibiotics to fight the residual strep.” In fact, prophylactic antibiotics are used in medicine to prevent infection, not treat it. It is true prophylactic antibiotics are sometimes used in PANDAS just as they are in other medical conditions such as rheumatic fever; however, three full dose antibiotics would never be used. To the contrary, in such cases a low dose of one antibiotic such as penicillin is used. Probiotics are also administered and children are monitored closely for any adverse effects. Physicians treating PANDAS are concerned members of the medical community aware of the risks of antibiotic overuse. After decades of practice they have found that children on a single long term prophylactic antibiotic with concurrently administered probiotics rarely have adverse effects. Any time a doctor administers medical treatment they weigh risk versus benefit. In these children, the benefit far outweighs the risk.

 

The drama also falsely implied that a child with a family history of OCD was unlikely to have PANDAS. Studies have shown that a family history of OCD is actually common in children with PANDAS. No parent or physician suspecting PANDAS in their child should rule it out simply because there is a family history of OCD or Tourette syndrome.

 

Perhaps the hardest moment for me, both as a physician treating PANDAS and as a PANDAS mom myself, was the show’s dismissal of the value of IVIG (intravenous immunoglobulin) as a treatment for children with PANDAS. My own son went from being severely disabled to a fully functioning, happy, vibrant kid due to IVIG. We got him back. He got his life back. I have seen it in so many other patients. And I have dealt with the day in day out heartbreak of my severely affected patients who are unable to receive badly needed IVIG treatment because of denial by insurance companies. Children who cannot attend school, who cannot leave the house, who are truly living in a hell you cannot imagine, could be saved but are left to languish by an insurance system that refuses to cover this effective treatment proven in studies performed at the National Institute of Health and borne out by thousands of patients over the past two decades.  

 

We are in a “parent trap” that no parent should have to face. More importantly, our children are in one far worse. We have the ability to save these children. I call on anyone who loves their child, anyone ever dismissed by the medical community for looking for answers, anyone who believes children have the right to not have their childhood stolen, to join our PANDAS parent community to make a difference for these kids. Tell someone about PANDAS who doesn’t know. Support legislation to compel insurance companies to cover treatment. Share this letter. You just might save a life.

 

Dr. Elizabeth Spaar

 

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