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Why Some Doctors Believe PANDAS Isn’t a Real Diagnosis

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PANDAS affects vulnerable children ages 3 through 13 — with boys twice as likely to be diagnosed.¹ It causes OCD and other frightening neuropsychiatric symptoms to develop overnight. PANDAS scares the parents just as much as the children. This article explains proper PANDAS diagnosis protocols, and why some doctors object to the diagnosis.

20 years of research confirms that PANDAS exists.

Yet, many doctors still refuse to diagnose PANDAS.

Countless doctors say that PANDAS syndrome is a hoax. But, as parents of a former PANDAS patient, we understand what it’s like for someone to tell you you’re wrong. You’re not crazy. You do know your child.

What Is the Controversial Illness Known As PANDAS or PANS?

PANDAS stands for “Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.”

PANDAS means a Group A strep infection — such as strep throat, scarlet fever, or rheumatic fever — which uses molecular mimicry to fool a child’s own immune system into attacking the child’s forebrain (called the basal ganglia).² This leads to abrupt onset OCD (obsessive-compulsive disorder) and related symptoms.

The broader but more recently identified PANS (“Pediatric Acute-Onset Neuropsychiatric Syndrome”) describes the same sudden onset of symptoms, but with no identified strep infection. PANS can be caused by a number of various infectious diseases.

Is PANDAS a real diagnosis? Though controversial, PANDAS has been a named disease for more than 20 years.³ Even when study after study shows that PANDAS treatments solve a problem, some doctors still claim it is a hoax and that OCD should only be treated with classical OCD treatments.⁴

PANDAS Network estimates more than 1 in 200 children are affected by PANDAS.

PANDAS Diagnosis: Why Some Doctors Believe PANDAS Isn’t a Real Diagnosis - Why Some Doctors Object - question marks on sticky notes

Why Some Doctors Object

Though recognized in much of the current body of medical literature, PANDAS can be a disease with rapidly changing symptoms. Sometimes, it is unaffected by antibiotics. Sometimes, it develops after a strep infection goes away. 

Symptoms can come and go over time. In addition, accepting this diagnosis requires the medical community to look at mental illness in an entirely new way.

Though problematic, these inconsistencies simply need more research and clinical trials to work through them. But many take umbrage at the current evidence being touted as fact.

Even in recent years, many neurologists and pediatricians still refuse to accept the mountain of published research.

Some admit that a strep infection may lead to OCD exacerbations, but insist that the OCD was already present and strep infections cannot trigger OCD symptoms.⁵

Others posit that OCD — even when developed after an infection — should be treated with standard OCD therapies, not antibiotics or other proposed PANDAS treatments.

A doctor at the National Institute of Mental Health (NIMH), Dr. Paul Grant, said: 

“Because it’s not seen in every pediatric practice, [many pediatricians] don’t accept that it’s a real thing. But my experience is, when you see it, you say, ‘I don’t see how anybody could doubt that this is a real thing.’”

PANDAS Diagnosis: Why Some Doctors Believe Pandas Isn't a Real Diagnosis - How Were PANS/PANDAS Discovered? - Doctor adding cultured swab to vial

How Were PANS/PANDAS Discovered?

Throughout the 1980s 1990s, researchers (led by Susan Swedo, who worked at the National Institutes of Mental Health) were examining children who had symptoms of OCD and tic disorders preceded by a strep infection.

1995, the name PITANDs was given — “Pediatric Infection-Triggered Autoimmune Neuropsychiatric Disorders.” But this didn’t hone in on the main culprit of these OCD symptoms: strep infections.⁶

1998, years of research culminated in a landmark paper published in the American Journal of Psychiatry, which discussed the “first 50 cases” of PANDAS.⁷ This was the first paper to name PANDAS, which necessitated a preceding Group A strep infection.⁸

2010, researchers including Swedo developed the working criteria for PANS (pediatric acute-onset neuropsychiatric syndrome), which described the same set of symptoms, but with no preceding strep infection. (Essentially, this term included PITANDs and added toxin exposures.) The list of infections and toxins that are documented to cause PANS continues to grow, and includes:

  • Mycoplasma pneumonia⁹
  • Influenza (H1N1)
  • Epstein-Barr virus¹⁰
  • Lyme disease
  • Chickenpox
  • Bartonella henselae bacterial infection¹¹
  • Toxin exposure

Eventually, experts convened and standardized how to diagnose PANDAS:¹²

  1. Did the child develop OCD symptoms over the course of 1-3 days? And are the symptoms episodic?
  2. Is the patient between the age of three and puberty?
  3. Has a blood test or throat culture tested positive for strep bacteria? (Or, has a strep infection been confirmed from the past few weeks?)
  4. Does the child exhibit other symptoms of PANDAS, such as: 
    1. Vocal/physical tic disorders
    2. Separation anxiety
    3. Behavioral regression
    4. Aggression
    5. Drop in academic performance
    6. Trouble sleeping 
    7. Bedwetting 

Can the PANDAS symptoms not be better explained by another mental illness, such as Tourette syndrome, Sydenham chorea, or ADHD?¹³ If so, it should not be diagnosed as PANDAS.

PANDAS Diagnosis: Why Some Doctors Believe Pandas Isn't a Real Diagnosis - What Does Science Say? - science and research tools

What Does Science Say?

At the bottom of this short article, we have cited more than a dozen scientific articles supporting PANDAS as a legitimate disorder, not a hoax.

But to summarize the current medical literature, PANDAS took a long time to identify. It is easily confused with several other mental illnesses, such as ADHD or standard childhood OCD. In 1998, it was named. 

Since then, countless studies have examined the nature of PANDAS and further confirmed its existence — and how terribly common it may be.

Many doctors are wary of such a recent discovery and cry hoax. However, 20+ years of research show that PANDAS is a unique and legitimate disorder.¹⁴

One topic discussed at length in many studies is the science-backed treatments for PANDAS. Here are the most popular, science-backed treatment options :

  • Cognitive behavioral therapy¹⁵
  • Intravenous immunoglobulin (IVIG)¹⁶
  • Plasmapheresis (AKA plasma exchange)¹⁷
  • Removal of tonsils¹⁸
  • Antibiotic treatment,¹⁹ though long-term antibiotic therapy can have lasting side effects
  • Vitamin D therapy

Challenges Facing Parents

We speak from experience. Our daughter was diagnosed with PANDAS a few years ago. We were thankfully able to overcome the challenges facing us as parents and help her recover from this frightening disorder.

But we were fortunate in many ways. A lot of parents can’t find experienced physicians willing to diagnose a child with PANDAS.

Finding a PANDAS Doctor - someone typing, searching on computer

PANDAS Diagnosis: Finding a PANDAS Doctor

As we mentioned earlier, there are many doctors who do not believe PANDAS is a legitimate diagnosis. It can be heartbreaking for a parent to be told that this disorder that perfectly describes your child’s condition isn’t real.

If you suspect that your child might have PANS or PANDAS, give us a call at 317-989-8463 or contact us here . Located in Carmel, Indiana, we are experts in the diagnosis and treatment of children with PANS and PANDAS.

We also see patients from across the country. The first visit must be in the office but often follow-ups may be done remotely. If you are unable to travel, you may be able to find a physician near you at the PANDAS Physician Network

A good PANDAS doctor should use the following testing to diagnose PANS/PANDAS:²⁰

  • Physical examination
  • General labs such as a blood count (CBC) and chemistry
  • Immune function testing
  • Comprehensive Medical history
  • Family history

Children with PANDAS are 10 times more likely to have a parent or sibling with OCD or tic disorders.²¹ If you have a family history of these psychiatric disorders, it seems more likely that your family members will develop PANDAS after a strep infection.

High Cost & Lack of Insurance Coverage

Some of the PANDAS treatments cost thousands of dollars. Many parents have crowdfunded their children’s treatments. Others have left it untreated.

In Illinois, “Charlie’s Law” went into effect a couple of years back.²² It requires insurance companies to cover expenses for PANDAS treatment — as well as treatments for other autoimmune disorders

Dr. Scott has been involved in and testified for a similar law in Indiana. Once this is passed, Insurance companies will not be able to deny coverage for treatments based solely on the diagnosis of PANS or PANDAS.

In January 2022, the 11th edition of the International Classification of Diseases is set to include PANDAS as a cause of sudden onset OCD.²³ This will make it much easier for insurance companies across the country to cover PANDAS treatments and should push some doctors to accept it for the fact that it is. (The 10th edition was approved in 1990 before PANDAS was identified.)

Can a Child Outgrow PANDAS?

Does PANDAS disease go away? Sometimes, a child can “outgrow” PANDAS if the strep infection is treated, but not always. If the child gets another strep infection, the PANDAS will almost certainly come back if it wasn’t treated the first time. 

Many situations require some sort of treatment for the behavioral effects — which can far outlast the course of a strep infection. 

What Happens if PANDAS Goes Untreated?

If PANDAS is left untreated, the child can develop a chronic autoimmune disease, and OCD symptoms will follow them into adulthood.

In Summary

  • PANDAS is a disorder wherein a strep infection tricks a child’s immune system into attacking their own brain, leading to sudden onset OCD symptoms.
  • An unfortunately large number of doctors still refuse to accept the mountain of research and evidence supporting the existence of PANDAS. Many still believe it is a hoax.
  • If you are unable to travel to see us, The PANDAS Physician Network is a good resource for finding a PANDAS doctor. We suggest investigating these options before deciding though, as each physician may have a different practice style.
  • Insurance companies have been slow to cover PANDAS treatments. However, not only are state legislatures passing laws requiring insurance companies to cover PANDAS, the International Classification of Diseases plans to include PANDAS in its 2022 edition — paving the way to widespread acceptance in the medical community.

You can book an appointment by clicking here. We are also happy to speak with you at (317) 989-8463, Monday-Thursday, from 8AM – 5PM Eastern time.

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Sources:
1 https://pdfs.semanticscholar.org/18d2/35883c50806ae7a6 18586571d24a90bfe490.pdf
2 https://www.cdc.gov/groupastrep/diseases-public/rheumatic-fever.html
3 https://pubmed.ncbi.nlm.nih.gov/30724577/
4 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5826468/
5 https://www.semanticscholar.org/paper/Pediatric-autoimmune-neuropsychiatric-disorders-Shulman/01c55f028dd95d728224d3b9ff5c32279498657a?p2df
6 https://pubmed.ncbi.nlm.nih.gov/7896671/
7 https://ajp.psychiatryonline.org/doi/full/10.1176/ajp.155.2.264
8 https://nccid.ca/debrief/group-a-streptococcus/
9 https://academic.oup.com/jid/article/198/9/1365/834846
10 http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.967.4329&rep=rep1&type=pdf
11 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6423671/
12 https://www.healio.com/news/pediatrics/20121012/10_3928_1081_597x_20010101_00
13 https://www.ninds.nih.gov/Disorders/All-Disorders/Sydenham-Chorea-Information-Page
14 https://www.sciencedirect.com/science/article/pii/S0149763417305833
15 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4442557/
16 https://pandasweb.nl/cfsystem/userData/literatuur/1317330723__document__therapeutic-pf-and-ivig-for-ocd-and-tic-disorders-perlmutter-1999.pdf
17 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4864542/
18 https://www.hindawi.com/journals/ijoto/2018/2681304/
19 https://pubmed.ncbi.nlm.nih.gov/29722936/
20 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4340805/
21 https://pubmed.ncbi.nlm.nih.gov/10986808/
22 https://www.reuters.com/article/us-illinois-insurance/illinois-law-requires-coverage-of-pediatric-autoimmune-disorders-idUSKBN1A32B7
23 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5125074/

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