Ep. 48: The Struggle to Diagnose PANDAS Can Frustrate Parents
As a Pediatric ENT surgeon with over 30 years of experience, I have had plenty of opportunities to witness the struggle to diagnose PANDAS in kids. And of course, that means I have had to deal with incredible amounts of frustration shared by parents.
Ever since I started blogging, I have been repeatedly asked to address this topic. I hesitated because, from a physician’s standpoint, we understand the process of making a diagnosis before selecting the best treatment options. Well, because PANDAS is a syndrome made using detailed medical history and clinical findings, there is no uniform way to make the diagnosis of PANDAS.
This means that on a case by case basis, each potential patient is evaluated and often does not fit the criteria needed for a clear diagnosis. PANDAS was not identified until 1998, so there are not any long-term studies of children with PANDAS.
So here I am. About to tackle a medical problem that many physicians or other healthcare providers do not agree upon. Some believe it exists but is extremely rare and tends to be overdiagnosed. Some organizations believe that it is much more common than reported and can occur as often as many as 1 in 200 kids. Yes, people feel that there is at least one child in every kindergarten class with PANDAS!
I believe most things in medicine are not black and white but somewhere in the middle. I am trained to use science and proven treatment methods to address all of my patients’ concerns.
What is PANDAS?
Now is a good time for us to all get on the same page. So what is PANDAS? Clearly I am not talking about the cute black and white bears that I am using for graphics. But, I am corny and will use them anyway!
PANDAS is a neurologic syndrome that is felt to be an unusual complication of Strep Throat. The letters in the name stand for pediatric autoimmune neuropsychiatric disorders associated with streptococcus. This is a whole lot of words that mean some people may have neurologic symptoms after a strep infection.
Here is where it gets tricky: The exact cause of PANDAS is the subject of ongoing research. There are many theories but one is that the immune system mounts an abnormal response to a common strep infection. This bacterium can be hard to kill because it is really good at hiding. It disguises itself so that it looks like a regular cell found in the body.
The immune system eventually catches on to the trickster strep bacterium and begins to make antibodies to fight the infection. But, because Strep has mimicked other healthy cells in our body, the antibodies also can attack the body’s own normal tissues.
In my previous post, I discussed some severe complications of Strep Throat. In the case of PANDAS, the antibodies attack a special area of the brain which may cause the symptoms of PANDAS.
And here is yet another tricky issue. The exact same set of symptoms can be caused by completely different bacteria or viruses. When this happens, the disease is called pediatric acute-onset neuropsychiatric syndrome (PANS).
What are the symptoms to diagnose PANDAS?
PANDAS has been classified as a subset of PANS because they are both autoimmune diseases that affect the brain. The symptoms are similar, but they are caused by different things, many of which are never identified.
Kids with PANDAS are often reported to turn into completely different people overnight. It can be scary but often turns frustrating to parents as they witness the struggle to accurately diagnose PANDAS in their kids.
Two of the most common symptoms of PANDAS include obsessive-compulsive disorders (OCD) and tics. OCD often causes thoughts that kids cannot get out of their minds. These thoughts may give them an urge to repeat an action over and over. Tics are sudden movements or sounds that kids repeat and cannot control. Some examples of tics can include excessive blinking, head jerking, grunting, throat clearing, sneezing or repeating words.
- Symptoms of ADHD, such as hyperactivity, fidgeting, and trouble paying attention
- Anxiety attacks or fear of being away from parents
- Behaviors kids had previously outgrown, like temper tantrums or baby talk
- Joint pain
- Moodiness, irritability, and crying or laughing at inappropriate times
- Sensory problems,
- Sleep problems
Needless to say, many children will have a large variation in the severity and number of symptoms; consequently, this adds to the complicated ability to accurately diagnose PANDAS. Many different things can cause the symptoms of PANDAS and kids may have certain symptoms one day and different ones the next.
How do physicians diagnose PANDAS?
PANDAS can occur in anyone, but it is most common in kids between 3 and 12 years old who have had a strep infection within the last four to six weeks. And since Strep season tends to be in late fall and early spring, these times of year carry the greatest risk. Very little research has looked into whether PANDAS can show up in older kids or adults.
To diagnose PANDAS, your pediatrician will first take a detailed medical history. It cannot be emphasized enough how important it is for parents to provide this information because to diagnose PANDAS, a clinical diagnosis must be made which is then supported by tests.
Nevertheless, after a suspicious history is obtained, a physician may take a throat culture or run a blood test. A blood test can show whether your child had a recent strep infection even if not currently active.
And it goes without saying that simply testing positive for Strep does NOT mean the diagnosis is PANDAS. Additionally, the strep infection can be located in another area of the body besides the throat. If it does not show up after a throat swab, physicians may check other places strep tends to hide, like the sinuses or the child’s bottom and genitals.
Without a positive strep culture, it is extremely difficult for physicians to proceed with this diagnosis. However, there are no laboratory or neurological tests to specifically diagnose PANDAS. This is the most important take-home message.
Guidelines to diagnose PANDAS
The National Institute of Mental Health has introduced guidelines for diagnosing PANDAS. These criteria include:
- Presence of clinically significant obsessions, compulsions and/or tics
- Unusually abrupt onset or a relapsing course of symptoms
- Symptoms of the disorder first are identified between 3 years of age and puberty
- Documented presence of Strep infection
- Presence of other neuropsychiatric symptoms
The emphasis on finding evidence of a strep infection is extremely important. If a child does not have strep, the child does not have PANDAS.
Dr. B.’s editorial on immune system reactions
Before I end, I want to share a little editorial that may help parents to better understand our immune system. Strep is a very common illness which many kids get every year. It is usually harmless and easily treated; however, there are some kids who develop severe complications which sometimes leads to permanent consequences.
These unfortunate situations do not mean that the strep bacteria have somehow become a much more sinister or aggressive bacteria; it is simply the result of an individual immune system having an unusual reaction. This can happen with anything in our environment. Allergies are an unusual reaction of an individual’s immune system to things that most of us tolerate without a problem.
So, of course, I am going to add that this may also be a situation where parents report unusual neurologic reactions to vaccines, medications or procedures. Vaccines are incredibly safe and effective and have been enormously successful in improving global health. Vaccines do not cause autism or lead to the development of the disease it is intended to protect against.
Everyone needs to understand that healthcare is based on understanding that physicians must use scientifically backed evidence to determine what is an expected result versus an isolated individual response. Physicians are well trained to understand what the typical immune system reaction to any given environmental change may be. Autoimmune and other abnormal, atypical immune reactions are entirely individual results which will be managed with the best treatments possible. These unusual immune reactions are often based on a genetic predisposition or an underlying health status which can lead to consequences that are not predictable.
Surprise! I am not going to discuss PANDAS treatment now because I want everyone to digest the information provided about the difficulty in the process to diagnose PANDAS.
My next episode will take this information to the next level and begin the discussion about how PANDAS treatment remains controversial. It may also shed light on the fact the cost of treatment for some children is so high that the diagnosis and treatment of PANDAS mostly occur in wealthy children.
As always, much love for supporting my work. I will be adding many more posts to highlight parenting and healthcare tips, so be sure to consider subscribing to my podcast or to my blog to avoid missing a post!
Why PANDAS Diagnosis and Treatment can be so controversial
Guidelines for diagnosis PANDAS
International OCD Foundation PANDAS Fact Sheet
National Institute of Mental Health PANDAS Overview
Thanks Dr. B for this! PANDAs I completely agree can almost always be diagnosed based on a careful history — and we need the story, in detail, well-documented, to get the diagnosis right! Unfortunately, even with the fancy EMRs so many docs rely on, it will often come down to parents to help keep the records and dates straight when working with multiple doctors and facilities. We don’t know what the urgent cares and EDs are doing half the time. Which, I know, isn’t good — but together, using the resources we’ve got PLUS input from the parents, we can almost always get to the bottom of these things. Labs tests and things are far less helpful to nail down this diagnosis than a clean, correct history.
I so love to hear from pediatricians in situations like this. Your response is so valuable! I constantly tell my patients why it is important to see their primary care vs ER or urgent care so that the complete history is known. And if an urgent visit is needed, the notes and history must be reported to the pediatrician later so they know what has happened between visits. Patients still think that physicians can simply “get” the notes or history from another physician, but I remind them that they are a vital part of the team. Parents really need to bring the history and treatments from one physician to share with the other.
Thank you for writing this excellent and thoughtful summary. Unfortunately, there is plenty of misinformation out there oversimplifying this complex process of clinical diagnosis and cautious treatment.
Thank you for reading. It is indeed a complex problem and think it is important for parents to understand why it is difficult to make a diagnosis that many people feel is straightforward. I wrote a second blog about PANDAS treatments which highlights the risks some of the treatments carry. The risks can be extreme and physicians will not use them without clear information to guide them.