PANS/PANDAS Basics

What do the acronyms stand for?

PANS

Pediatric Acute-onset Neuropsychiatric Syndrome

PANDAS

Pediatric Autoimmune Neuropsychiatric Disorders Associated with
Streptococcus (the most widely studied subset of PANS)

What are Triggers?

PANS/PANDAS is suspected to result from infections or environmental triggers that cause an abnormal immune system activation. The immune system is then suspected to attack neuronal cells and other systems of the body, resulting in psychiatric and physical symptoms. Both conditions are clinical diagnoses. In all cases, there are clear behavioral, neurological, or physical symptoms.

What are the signs and symptoms of PANS/PANDAS?

The following symptoms, when seen in combination, can be indicative of PANS/PANDAS. All symptoms can wax/wane and often get worse with illnesses or exposures. Some children/adults are able to control symptoms in specific environments (school, around extended family) and others aren’t. Some children/adults realize they are having symptoms, and others are unaware. PANS/PANDAS can have a sudden onset or a more gradual onset with worsening symptoms as time goes on.

Obsessions are unwanted, uncontrollable/intrusive repetitive thoughts that sometimes lead to compulsions, urges, or repetitive behaviors. The compulsions are often done to try and control the obsessive thought, such as checking locks because of a fear of robbers. Some people ruminate on these looping thoughts and even describe a feeling of being “stuck.” OCD will often have a certain “theme.” Examples include germ phobias, religious themes, fears of bad luck or even death, sexual orientation or thoughts of sexual nature that aren’t consistent with how a person feels, etc. People can also experience “just right” ocd where they need things to be a certain way and purchasing ocd where the compulsions are shopping related.

Tics are involuntary, repetitive movements (motor) or sounds (vocal). They can include blinking/winking, eye-rolling, shoulder shrug, limb movements, facial grimace, pursing lips, neck stretching, coughing, grunting, sniffing, throat clearing, humming, sounds, words, phrases, stuttering, etc. Tics in PANS/PANDAS often have a rapid onset of complex tics that involve multiple body parts or movements and take seconds (rather than milliseconds and simple tics often seen in early stages of Tourette’s Syndrome and other tic disorders.

Children with PANS/PANDAS often have rapid onset or sudden worsening of anxiety. It can include separation anxiety, general anxiousness, specific and maybe even irrational fears, worry, social anxiety, situational anxiety, panic attacks, etc.

TRIGGER WARNING – Descriptions of thoughts children might have can be hard to read. Please take that into consideration before reading further. We share them here for those who need reassurance that these thoughts are not uncommon in kids with PANS/PANDAS.

Intrusive thoughts are often linked to OCD. They can include violence against others or self, doubts or worries about relationships, decisions, sexual orientation, or identity, traumatic memories, religious thoughts that are inconsistent with personal or family beliefs, thoughts about death or health, inappropriate sexual acts against self or others, suicidal thoughts, strange and nonsensical thoughts (kids will often say “my brain is telling me to do/say something but I don’t want to”).

ARFID stands for Avoidant Restrictive Food Intake Disorder. It is related to OCD as it involves restrictive eating connected to a fear or intrusive thought. This could include a fear something will happen if a particular food is eaten, a fear that something is poison, fear of throwing up or choking, contamination concerns, etc. It is not often related to body image or desire to control weight, but in some cases this can be present as well.

Children with PANS/PANDAS often experience impulsivity, rapid mood swings, sobbing and screaming, anger or even rage. These usually happen more intensely in a flare with periods of comparable developmentally appropriate stability between flares. Some children will have prolonged flares where these symptoms can be present for months on end.

While not the most common symptom of PANS/PANDAS, depression can be associated with the condition. Children might express sadness, hopelessness, loss of interest or pleasure in most or all normal activities, tiredness and lack of energy, feelings of worthlessness or guilt, thoughts of death, suicidal thoughts, suicide attempts or suicide.

Rage is among the most common concerns parents of PANS/PANDAS kids struggle with. Rage can seem to come from nowhere or be connected to OCD or sensory sensitivities. Parents often report irritability, destructive or violent words, or actions and defiance/opposition. Sometimes, the person experiencing this isn’t aware of the severity of their actions or will seem to “come to” after a rage episode and not remember what happened. Other times they are very aware and may even show remorse following a blow-up.

Children with PANS/PANDAS often show defiance or oppositional behaviors, sometimes connected to OCD and sometimes on its own. You might see patterns of negative, hostile, or defiant behavior, temper tantrums, arguing, defying or refusing to follow requests or rules, annoying or upsetting others on purpose.

Attention and hyperactivity issues are common with PANS/PANDAS. ADHD can be present prior to PANS/PANDAS onset and be comorbid with the condition, or it can occur only during a flare. Symptoms to look out for include poor concentration, inability to start/finish tasks, hyperactivity, difficulty making decisions and remembering things, brain fog, etc.

PANS/PANDAS impacts the brain in a way that children will often have a sudden deterioration in school performance. This can include changes in handwriting/drawing/math skills, memory issues, loss of reading comprehension

Children with PANS/PANDAS can have behavioral and developmental regressions that might look similar to someone who is on the autism spectrum. This could be fluctuating with flares or seem more persistent. Regressions commonly seen in PANS/PANDAS include speech regression/baby talk, acting like a child much younger than they are, loss of abilities they had previously mastered such as tying shoes, bedwetting, etc.

Sleep is often significantly impacted withPANS/PANDAS. Kids might experience insomnia, sleeping too much, taking hours to get to sleep or back to sleep, won’t sleep alone, or fear of the dark.

PANS/PANDAS will often increase sensory sensitivity. Common symptoms include intense sensitivity to certain sounds, even to the point of rage (misophonia), sensitivity to light (photo sensitivity), sensitivity to textures/clothing, sensitivity to smell or taste, easily feeling overwhelm, or can’t be touched/hugged.

While GI complaints aren’t part of the diagnostic criteria for PANS/PANDAS, we often see kids who have tummy troubles. We regularly see pain, bloating, gas, nausea, constipation/diarrhea, small intestinal bacterial overgrowth (SIBO) and other motility issues, candida, and intestinal hyperpermeability (leaky gut). There can be other autoimmune related conditions of the intestines such as Crohn’s and ulcerative colitis that might be present along with PANS/PANDAS.

Children with PANS/PANDAS commonly have urinary concerns. These can include frequent urination, urinary urgency, odd sensations like being “wet” or the feeling of not being able to wipe completely, or incontinence (either during the day or night time bedwetting). You might observe fears/OCD or other changes revolving around bathroom habits. Some children will have more frequent urinary tract infections that contribute to or cause flares of neuropsychiatric symptoms.

With a condition as complex as PANS/PANDAS, you can see symptoms throughout the body. Things like headaches, back/neck/body pain, joint pain might be related to PANS/PANDAS if you are seeing other symptoms as well.

Parents will often find that their child has become more sensitive or reactive to foods that they once ate without issues. This could include common food allergens such as wheat/gluten, dairy, eggs, soy, and corn, food dyes, high histamine foods, etc.

The Root Cause of PANS/PANDAS

It’s not the trigger; it’s susceptibility! Susceptibility is a person’s unique response to certain illnesses or triggers. It is the difference between a child who gets strep and has a sore throat and fever and a child who gets strep and has OCD and tics. Anything that can cause an immune response can be a trigger and potentially cause a “flare-up” of symptoms. The triggers are not the problem. The misdirected immune response is. Homeopathy is the only form of medicine that can help the body heal itself and change susceptibility.

CONTACT US TODAY TO SPEAK WITH A CLIENT GUIDE

GET STARTED