A COMPREHENSIVE MEDICAL APPROACH TO PANS AND PANDAS
Gut Health, Wrongly suspected PANDAS and OCD
“Our child was struggling with anxiety and OCD. Upon doing some research we found Dr. Sultan's name on a website associated with PANDAS. After our initial visit we were able to determine our child did not have PANDAS, but in fact an imbalance of the gut. We began some blood work to determine levels. We began allergy shots and taking vitamins. We've been watching diet and cutting out sugar. With the help of Dr. Sultan and his knowledge of "gut health" we were able to determine what was wrong. We are currently symptom free and maintaining well with the follow-up appointments with Dr. Sultan. We can't thank him enough for all that he has taught us.” August 2019
Dr. Sultan's Comments: PANDAS is a rare disease. You should always look for other causes that are much more common than PANDAS for such neuropsychiatric symptoms like OCD, anxiety, depression. Always, the key question is: have we ruled out all non-PANDAS causes! Though parents suspected PANDAS but were not hooked on that diagnosis. They were open-minded and wanted to look from all angles. That's the key to success
Keeping the above Success Story and Dr. Sultan's comments in mind, let's understand PANS first and then it will become easier to understand PANDAS.
PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome and includes all cases of acute onset OCD, not just those associated with streptococcal infections. So, PANS is an all-inclusive term. It includes all cases of children and adolescents who have a sudden onset of obsessive-compulsive disorder (OCD) and/or tic disorder and several other symptoms. The key point is that PANS has no specific cause assigned to it.
On the other hand, the term PANDAS is used to describe a much smaller subset of children and adolescents who have same sudden onset of same symptoms. However, there is a specific cause- strep. infection. That is the main difference!
For our discussion purposes, we will use the terms PANS and PANDAS interchangeably.
Here, we will present Traditional Medicine’s approach first and then Environmental Medicine’s perspective.
Traditional View and Approach:
Causes: It is an autoimmune response triggered by various infectious agents. This includes influenza, varicella (chickenpox), streptococcal bacteria (strep throat and scarlet fever), Lyme disease and mycoplasma infections (“walking pneumonia”). In PANS there is no cause. This is a limited view as it does not take in to consideration that the same symptoms can be triggered by environmental, nutritional and hormonal factors
Treatment: In case of PANDAS acute episodes are treated with antibiotics if an acute strep infection is detected. A throat culture should be done to document the presence of strep bacteria in the throat. If the throat culture is positive, a single course of antibiotics will usually get rid of the strep infection and allow the PANDAS symptoms to subside. Sometimes long-term antibiotics over months are prescribed for hidden strep. infection in hope of eradicating it from sinuses, rectal or urethral areas. Environmental Medicine perspective is that long-term antibiotic use is not warranted, and it causes more damage than good. It leads to gut dysbiosis which can not only aggravate PANDAS symptoms but cause new cerebral symptoms. Antibiotics can also trigger many environmental sensitivities like to sensitivity to dust, molds, pollens, foods and chemicals etc. It means, they can develop new ailments/allergies that they did not have it before. Long-term use of antibiotics is a bad idea. Period.
The rest of the treatment PANS/PANDAS is mostly symptomatic and supportive. It includes, for example, for obsessive-compulsive symptoms SSRIs and/or behavioral therapies, such as cognitive behavioral therapy (CBT) may be prescribed for OCD
Environmental perspective is SSRIs is not a good idea in any child, leave alone when you know that children with PANDAS appear to be unusually sensitive to the side-effects of SSRIs and other medications. So, a caution is warranted.
If these need to be used, should be used for control of acute symptoms and used for shortest period. Good news is that when look for causes for PANDAS and PANS, your child may not need psych medicines as we will discuss under Environmental Approach
Treating PANDAS with plasma exchange or immunoglobulin (IVIG)?
Plasma exchange or immunoglobulin (IVIG) may be a consideration for acutely and severely affected children with PANDAS. However, there are several side-effects associated with the treatments, including nausea, vomiting, headaches, and dizziness. In most instances these not indicated. In addition, there is a risk of infection with any invasive procedure, such as these. Thus, the treatments should be reserved for severely ill patients, and administered by a qualified team of health care professionals. It is expensive and may not be covered by insurance.
Environmental Perspective and Approach:
Causes: The environmental perspective is also that an acute onset of neuro-psychiatric symptoms like PANS/PANDAS is an autoimmune response triggered not only by various infectious agents as mentioned above, but also by many other factors. These include environmental, nutritional, dietary, endocrine, genetic and epigenetic factors. Please see potential triggers listed below. This a global perspective instead of a very narrow traditional view
Let us look at PANS and PANDAS from another perspective. How do we name diseases? From where did the terms PANS and PANDAS come from? We put a bunch of symptoms together and name it. For example, we call it arthritis when you have painful swollen joints and no cause; fibromyalgia is when you have severe aches and pains all over and you don’t have a good reason or injury to explain it. Or, if you have severe fatigue which does not go away with rest and no cause to explain it, we call it Chronic Fatigue Syndrome (CFS) etc. Similarly, PANS is an illness of sudden onset consisting of obsessive-compulsive disorder (OCD) and/or tic disorder and several other symptoms. It does not tell what the cause is. If we can be sure of the cause of illness as strep. infection, only then we can call it PANDAS. Even when we call it PANDAS, we cannot be sure as there is no test to prove it. That is why diagnosis of PANDAS requires that we must exclude all causes that result in sudden onset of neuro-immune symptoms and simulate it.. So, PANDAS is clinical diagnosis and as well a diagnosis of exclusion. Similarly, PANS does not tell us what the cause is. Interestingly, it called PANS when you don’t know the cause. Once a cause is found, it cannot be called PANS anymore!
Let us get away from names for a moment and focus on the causes. Just focus on all the symptoms your child has: Obsessive Compulsive Disorder (OCD), tics and whatever other symptoms. And, you do not know why? Also, you are not interested in labels. What you are interested in is what is causing the problem. You don’t care if we call it PANS, PANDAS, or Timbuktu.
One of the greatest discoveries made in the field of Environmental Medicine is that the most mental disorders result from physical causes and not from psychological causes especially serious ones. This is a great caveat! The onset of mental symptoms may be sudden or insidious developing over a longer period.
The Concept of Physical Causes to Mental Disorders
This applies not only to PANS/PANDAS but also to other mental disorders like depression, anxiety, Bipolar depression (Manic Depressive)’ tics disorder, Tourette syndrome, OCD ADHD (Attention Deficit Hyperactivity Disorder) and ADD (Attention Deficit Disorder) to mention a few. All these conditions are merely names and tell nothing about the cause
What are the causes that could trigger an acute onset of symptoms like those of PANS and PANDAS?
There are numerous causes: some of the most common causes are listed here:
- Metabolic causes: methylation defects like undermethylation (Low methylation) or over-methylation (excessive methylation);
- Minerals deficiencies: magnesium deficiency, Zinc deficiency
- Mineral excesses: copper excess
- Vitamins deficiencies: vitamin D deficiency, vitamin B12 deficiency, Folic acid deficiency, vitamin B6 deficiency
- Genetic disorders like MTHFR, Pyroluria
- Food sensitivities
- Chemical sensitivities
- Gut dysbiosis resulting from antibiotics and poor diet: SIBO (small bowel bacterial overgrowth), SIFO (small intestinal fungal overgrowth)
- Endocrine: Hypothyroidism (low thyroid)
- Toxic: Mycotoxicosis (mold toxins from living in moldy homes or from moldy schools)
- Infectious: influenza, varicella (chickenpox), and streptococcal bacteria (strep throat and scarlet fever), Lyme disease and mycoplasma infections (“walking pneumonia”).
How to Figure Out the Cause?
Based on history, physical examination and appropriate testing, most of these causes can be investigated and a cause can be demonstrated and treated successfully. The description, diagnosis and treatment of each of these conditions is beyond the scope this pamphlet.
Now, you can see why rushing to traditional approach for PANS/PANDAS without paying attention to these potential causes will be inadequate and inappropriate.
Question# 1. What symptoms may suggest that my child may have PANS/PANDAS?
The diagnosis of PANS/PANDAS is a clinical diagnosis, which means that there are no lab tests that can diagnose PANS/PANDAS. Instead, physicians use diagnostic criteria for the diagnosis of PANS/PANDAS (see below). At the present time the clinical features of the illness are the only means of determining whether or not a child might have PANS/PANDAS.
The diagnostic criteria are:
- Presence of obsessive-compulsive disorder and/or a tic disorder
- Pediatric onset of symptoms (age 3 years to puberty)
- Episodic course of symptom severity (see information below)
- Association with group A Beta-hemolytic streptococcal infection (a positive throat culture for strep or history of scarlet fever)
- Association with neurological abnormalities (physical hyperactivity, or unusual, jerky movements that are not in the child’s control)
- Very abrupt onset or worsening of symptoms
If the symptoms have been present for more than a week, blood tests may be done to document a preceding streptococcal infection. If a cause and effect relationship can be established with strep. infection, it will be called PANDAS. If it cannot, then it is called PANS which simply means same symptoms but no cause.
Question# 2. Are there any other symptoms associated with PANS/PANDAS episodes?
Yes. Children with PANS/ PANDAS often experience one or more of the following symptoms in conjunction with their OCD and/or tics:
- ADHD symptoms (hyperactivity, inattention, fidgety)
- Separation anxiety (child is "clingy" and has difficulty separating from his/her caregivers; for example, the child may not want to be in a different room in the house from his or her parents)
- Mood changes, such as irritability, sadness, emotional lability (tendency to laugh or cry unexpectedly at what might seem the wrong moment)
- Trouble sleeping, night-time bed-wetting, day-time frequent urination or both
- Changes in motor skills (e.g. changes in handwriting)
- Joint pains
Question# 3. What is an episodic course of symptoms?
Children with PANS/PANDAS seem to have dramatic ups and downs in the severity of their OCD and/or tics. OCD or tics that are almost always present at a relatively consistent level do not represent an episodic course. Many children with OCD or tics have good days and bad days, or even good weeks and bad weeks. However, children with PANS/ PANDAS have a very sudden onset or worsening of their symptoms, followed by a slow, gradual improvement. If children with PANDAS get another strep infection, their symptoms suddenly worsen again. The increased symptom severity usually persists for at least several weeks but may last for several months or longer. Repeated strep. infections do not aggravate symptoms of PANS and that is the main difference
Some Misconceptions About PANS/PANDAS
There are lots of misconceptions about PANS/PANDAS. We will try to clear up most of the misinformation.
Question# 1: My child suddenly developed OCD and Tics. My neighbor suggested it could be PANDAS. Is it PANDAS? I am looking for a physician who treats PANDAS; Do you treat PANDAS?
Answer: you cannot make a diagnosis of PANDAS that quick! You must fulfill two conditions to make a diagnosis of PANDAS-1.) by excluding other causes and 2.) an association by clinical symptoms as mentioned above
- Exclusion criterion: the diagnosis of PANDAS is by exclusion. There is no laboratory test to confirm the diagnosis. First, you must exclude all the potential causes that can result in an acute onset of OCD and tics and accompanying symptoms as mentioned above. This will fulfill exclusion criterion
- Second, PANDAS is a clinical diagnosis. It means that there should be a direct correlation between strep. infection (like sore throat or scarlet fever and documented by throat culture, group A Beta-hemolytic streptococcal infection) and sudden OCD, tics and other symptoms. If there is history of more than one episode of flare up of neuro symptoms with subsequent strep. throats, it makes association more likely. With every flareup of neuro symptoms or sore throat, cultures should be taken to show an association.
Question# 2: My child has had strep throat before, and now he has tics, OCD, or both. Does that mean he has PANDAS?
No. Many children have OCD and/or tics, and almost all school-aged children get strep throat at some point. In fact, the average grade-school student will have two or three strep throat infections each year.
PANDAS is considered as a diagnosis when there is a very close relationship between the abrupt onset or worsening of OCD and/or tics and a strep infection. If strep is found in conjunction with two or three episodes of OCD, tics, or both, then it may be that the child has PANDAS.
Question# 3: What does an elevated anti-streptococcal antibody titer mean? Is this bad for my child?
The anti-streptococcal antibody titer (number of molecules in blood that indicate a previous infection) is a test that determines whether the child has had a previous strep infection.
An elevated anti-strep titer means the child has had a strep infection sometime within the past few months, and his or her body created antibodies to fight the strep bacteria.
Question# 4. If my child has very high streptococcal antibody titer does it mean he has PANDAS?
No, it certainly does not mean PANDAS. Some children create lots of antibodies and have very high titers (up to 2,000), while others have more modest elevations. The height of the titer elevation doesn't matter, and elevated titers are not necessarily bad for your child. They are measuring a normal, healthy response – the production of antibodies to fight off an infection. The antibodies stay in the body for some time after the infection is gone, but the amount of time that the antibodies persist varies greatly between different individuals. Some children have "positive" antibody titers for many months after a single infection.
Question# 5: Does a positive Cunningham panel mean that my child has PANDAS?
No, it does not mean PANDAS. That only confirms that you have an autoimmune problem going in the brain, but it does not tell that it is caused by strep nor it tells which of the causes mentioned above have induced this autoimmune response. If Cunningham panel is positive you must find what is triggering that autoimmune process, not just assume it is PANDAS..
Question# 6: If I do not have documented strep throat, what about strep hiding in other parts of body like sinuses, urethra, rectal area?
If a properly obtained throat culture is negative, the clinician should make sure that the child doesn’t have an occult (hidden) strep infection, such as a sinus infection (often caused by strep bacteria) or strep bacteria infecting the anus, vagina, or urethral opening of the penis. Although the latter infections are rare, they have been reported to trigger PANDAS symptoms in some patients and can be particularly problematic because they will linger for longer periods of time and continue to provoke the production of cross-reactive antibodies.
Question# 7: How do you treat such hidden strep. infections?
The strep bacteria can be harder to eradicate in the sinuses and other sites, so the course of antibiotic treatment may need to be longer than that used for strep throat. However, long term antibiotics can cause havoc by disrupting gut microbiome (killing good bacteria and promoting growth of bad bacteria and fungi and yeasts). Imbalanced gut microbiome disrupts the normal gut-brain connection and can aggravate PANDAS’ symptoms. Whatever treatment your child receives, you should make sure that gut microbiome is not disrupted or damaged by the treatment.
Question# 8: I am frustrated and upset because of my child’s condition; which test tells that my child has PANDAS?
That is the whole point; there are no laboratory tests to diagnose PANDAS. It is a clinical diagnosis and a diagnosis of exclusion by excluding the above-mentioned causes!
Question# 9. My physician gave a trial of antibiotics and my child got better; does this mean he has PANDAS?
Yes, and no. Improvement could come from eradicating strep. Or it may not be from treating strep; it could be from treating a hidden gut dysbiosis and killing bad bugs in the gut. You must be careful with antibiotics because even if your child does not have gut dysbiosis now, he can certainly develop it with prolonged use.
Question# 10: Where do I go from here?
How many causes have you excluded so far? Probably none! Our approach is, taking a detailed history, a thorough physical examination and appropriate tests to find or exclude the potential causes mentioned above. Some causes can be excluded by a comprehensive history and physical examination while other causes will require appropriate tests
Question# 11: I want to consult Dr. Sultan for my child, how do I move forward?
Please give us a call (314-921-5600). We will be glad to make an appointment for Dr. Sultan to see you and send you a comprehensive 13-page history. He will go over the history and point out potential causes for your child’s problems. This is highly individualized approach and it is not a cookie cutter solution. Every patient is different. After his evaluation, he will make a roadmap prioritizing which causes should be looked at first and which causes be investigated later. After the initial testing, a treatment will be started. As we progress into the treatment, other causes will be explored as indicated. Our goal is that your child gets well and is not be dependent on downstream medical care (like antibiotics, SSRIs and other symptomatic medicines etc.)