The Inflamed Brain: Understanding PANS and PANDAS in Children
By Wendy Díaz
Maryland

 

Imagine if one day you wake up and find that your brilliant, loving, and playful child changed overnight. After making straight A’s in school and being a well-behaved student, you notice his grades dramatically decline. He starts getting in trouble with his teachers and even his handwriting looks off. The once polite social butterfly is now refusing to go to school or attend gatherings.

You are appalled to notice that although he was fully potty-trained years ago, he begins wetting the bed frequently. Furthermore, he engages in unusual bedtime rituals that, if interrupted, will send him into a frenzy. Then, shockingly, he develops a motor tic – grimacing or twitching every few seconds. Your parental instincts kick into high gear, and you rush to the emergency room or to your pediatrician, but they tell you that your child is fine. They suggest taking him to a neurologist for the tics, but their evaluation and lab work come back normal. “Have you considered taking him to a psychiatrist?” They ask, leaving you stunned. 

As your child becomes more and more socially withdrawn, you ask yourself, “What happened to my sweet boy?” 

This is the predicament of parents of children who are suffering with PANS or PANDAS. PANS is an acronym for Pediatric Acute-onset Neuropsychiatric Syndrome which is characterized by the sudden onset of obsessive-compulsive disorder (OCD), eating restrictions, and behavioral deterioration. PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, and it is a subcategory of PANS. In a nutshell, PANDAS is a condition in which neurological and psychiatric symptoms manifest during or after a strep throat infection. Both exhibit neuro-psychiatric symptoms that are caused due to an autoimmune response, thus they are considered forms of autoimmune encephalitis or brain inflammation. 

We often associate mental illness with emotional triggers or psychological imbalances. Those patients with access to healthcare are prescribed medications, psychotherapy, or a combination of the two to manage symptoms. But what if changes in behavior are triggered by an infection that causes inflammation in certain regions of the brain? When these disturbances appear suddenly rather than gradually, it could be PANS or PANDAS. It is important to learn about these disorders and others that cause neurological and psychological symptoms before assuming a child is mentally ill or turning to psychiatric medications. 

What the experts say

According to the National Institute of Health, autoimmune encephalitis (AE) refers to a group of conditions that occur when the body’s immune system mistakenly attacks healthy brain cells. This onslaught leads to neurologic and psychiatric symptoms including cognitive dysfunction, memory loss, seizures, abnormal movements (tics), speech and vision problems, psychosis, aggression, and anxiety. Doctors and researchers are still working to understand AE in children, as well as PANS and PANDAS. Some doctors either deny the existence of the latter or do not know much about them because they were only discovered a couple of decades ago. The most heart wrenching reality about the two disorders is that many children are misdiagnosed or have not been diagnosed at all, while their parents desperately seek answers. 

PANS symptoms include anxiety, sensory processing issues, motor abnormalities such as tics, behavioral regression, deterioration in school performance, mood problems, urinary incontinence, and/or sleep disturbances. A PANS diagnosis does not require a specific cause, although it is believed to be triggered by one or more pathogens.

Dr Casoli-Reardon, Medical Director of the Massachusetts Child Psychiatry Access Program, has been researching and writing about PANS and PANDAS for years. She says, “While PANDAS is associated with a Group A Streptococcal (GAS) infection, PANS is believed to be triggered by a variety of infections such as mycoplasma pneumonia, Lyme disease, HIV, herpes, and influenza. Evidence of post-infectious autoimmunity and/or neuroinflammation is found in more than 80 percent of PANS patients.” Since the Covid-19 pandemic, researchers have also been exploring the possibility of autoimmune encephalitis as a complication of Covid-19 or post-Covid condition. These links are helping to bring awareness to the reality of PANS and PANDAS.  

According to Moleculara Labs, PANDAS was first discovered in 1998 by Dr Susan Swedo of the National Institute of Mental Health. It is “a treatable disorder that occurs seemingly overnight and can cause debilitating symptoms in children and adolescents.” The average ages at onset are between four and seven and boys are more likely to experience it than girls. PANDAS is a subset of PANS and has five distinct criteria for diagnosis, including abrupt “overnight” OCD or dramatic, disabling tics; a relapsing-remitting episodic symptom course; young age at onset; presence of neurologic abnormalities; and an association between symptom onset and Group A strep infection. “The five criteria usually are accompanied by similar comorbid symptoms as found in PANS,” reports Moleculara Labs.

PANS and PANDAS may be misdiagnosed as other disorders such as autism, OCD, Tourette’s syndrome, anxiety, bipolar disorder, and even anorexia. Dr. Swedo said, “PANDAS may be more difficult to recognize in a child with autism – due to overlapping symptoms. Or it may be mistaken for classic OCD, which commonly co-occurs with autism. What distinguishes PANDAS from autism symptoms or classic OCD is the sudden onset of symptoms. As mentioned, this can include new anxieties and compulsive behaviors. Importantly, these symptoms are often accompanied by some tell-tale symptoms not usually seen with classic OCD. These include sleep difficulties, loss of bladder control, behavioral regression, and loss of appetite. As we mentioned, many children with PANDAS also develop odd movements (e.g., tics), become irritable and moody or become noticeably more sensitive to loud noises or other stimuli.” 

A family’s struggle

Irma Bosnjo’s son was misdiagnosed several times before a doctor finally acknowledged what she suspected. Bosnjo’s family lives in Sarajevo, Bosnia-Herzegovina. Her husband is an electrical engineer of telecommunications, and she holds a BSc in economics. They have two children, boys ages 8 and 2. Her eldest son is in second grade, and he has PANDAS. Bosnjo’s son had significant health challenges from the age of two – multiple upper respiratory infections, recurring ear infections, and he was eventually diagnosed with a developmental disorder. 

Bosnjo said, “We noticed that something was wrong in 2019, after a strep infection, but we were not sure what it was.” Her son became obsessed with numbers, and especially the number seven. Suddenly he was regressing in academic performance, speech, and conduct. He began displaying motor and vocal tics, teeth grinding, frequent urination, food aversions, inability to sleep alone, strange fears, and other odd behaviors. “Doctors kept telling me that it is just his autism-like behavior, and it was considered ‘normal’ due to his condition,” Bosnjo explained. “We started our own research and came to learn about PANDAS. Since we do not have any specialists among the medical community here in my country, we decided to contact a specialist from the US, who confirmed a PANDAS diagnosis.” 

That was in February 2021 when her son was seven-year-old. Bosnjo added, “We felt a huge relief because we finally knew what was wrong with our son and started to find a way to convince doctors in Bosnia to help him. That came to be a very big challenge.” After suggested treatment options, including antibiotics, steroids, dental checkups, adenoid surgery, and two intravenous immunoglobulin (IVIG) treatments, Bosnjo’s son is doing much better, but is still under observation. Unfortunately, the Ministry of Health in Bosnia-Herzegovina does not yet recognize PANS or PANDAS as diseases. The family had to pay out of pocket for all health expenses and for travel to other European countries for the procedures. 

Bosnjo agreed to be interviewed to spread awareness about the disease her and her family have been fighting. Although she feels isolated in Sarajevo, where there are no PANS/PANDAS literate doctors, she has found support online. “The resources that I found useful are mostly Facebook groups about PANDAS and PANS and some web pages such as www.aspire.care and  www.pandasnetwork.org ,” Bosnjo said. She also recommends the book  The Parent’s Survival Guide to PANDAS/PANS by Deborah Marcus, who is also a mother of two children with PANDAS/PANS. Bosnjo wants parents to know that they are not alone, and to keep fighting for their children to get properly diagnosed. 

Closer to home

That is the same advice that Quesia Raqib, a behavior analyst, autism specialist, and founder of Learning and Behavioral Solutions gives to families going through similar situations. A native of Brooklyn, New York, Raqib and her family currently live in Atlanta, Georgia. She has three children, two sons ages 14 and 11 and one daughter aged 9. Her first encounter with PANDAS was eight years ago. She said, “My oldest son was diagnosed with autism at the age of two. As he got older, I became more confident in providing what he needed. However, when he turned 8, it’s like he became someone else! After tirelessly researching what was happening to my child, I realized he had PANDAS.” 

The changes Raqib’s son underwent were, as she describes, “traumatic for the whole family.” He began throwing and breaking things around the house, suffering from insomnia, having severe mood swings, and displaying aggression toward himself and family members. When he refused to eat, he had to be admitted to a hospital. Raqib recalls facing stigma in her community. She said, “My biggest challenge has been the false perception people had about my son. There are many who are still unaware of PANDAS and assumed it was evil influences that were causing those changes in him. At the time I was also very hard on myself and went into a ‘why me phase.’ It was overwhelming.”

Eventually her son was diagnosed with PANDAS by a naturopath doctor. He now follows a specific protocol to prevent him from going into what PANS/PANDAS parents and specialists label a “flare” or a relapse. Raqib notes it is important to know your child’s triggers or what causes potential flares. Thankfully, her son is on the mend, but she said, “It hasn’t been an easy road but, Alhamdulillah, he is doing much better.” She advises parents to take changes in their child or children’s behavior seriously, as “This is a medical issue and needs medical attention!” Like Bosnjo, Raqib also stresses the importance of joining a support group even if it is virtual.  

Things to look for

Dr Casoli-Reardon suggests, “Pediatricians should consider the possibility of PANS and PANDAS for any child who presents with sudden changes in behavior or mood.” There are certain criteria that doctors can check off when diagnosing these conditions. According to the PANDAS Network, the leading parent advocacy and research organization in the field, here are some of the tell-tale signs a child may exhibit:

• Sudden onset of symptoms, or abrupt, episodic changes in functioning
• Restricted eating (anorexia or aversion to specific foods or textures)
• Obsessive-compulsive symptoms (examples are fear of contamination, fixations, patterns of behavior or rituals)
• Motor and vocal tics (repetitive and involuntary twitches, movements, or sounds)
• Heightened anxiety, including separation anxiety and social anxiety
• Sensory issues
• Increased urinary frequency
• Handwriting changes and deterioration in school performance
• Impulsivity, inattention, and poor concentration

Every child is different and may present with other symptoms or a combination of some listed above and more. Parents and pediatricians should work together to obtain additional information, consult with specialists like pediatric neurologists and PANS/PANDAS literate physicians to formulate an appropriate diagnosis and treatment plan. To manage or even cure PANS and PANDAS requires treating or eliminating the underlying infection. The first step is identifying whether it is a Streptococcal infection, as in PANDAs, or another trigger like Lyme disease. In turn, this will reduce the autoimmune response that causes inflammation in the brain, affecting the nervous system.  

Parents should know that if they notice changes in their child’s behavior overnight and notice any of the symptoms associated with PANS/PANDAS, they should consult with their child’s pediatrician. Research PANS/PANDAS and print out information to present to doctors who may or may not know about the disorders. Like other families who are dealing with PANS/PANDAS suggest, know that you are not alone and what is happening to your child is not your fault. Above all, have hope that these symptoms can be reversed and that your child’s brain will heal. Find solace in the words of Prophet Muhammad, peace and blessings be upon him, who said:

"There is no disease that Allah has created, except that He also has created its treatment." (Bukhari)

Additional Resources: 

• Pandasnetwork.org
• Pandasppn.org
• Aspire.care
• My Kid is Not Crazy (Documentary):  https://www.youtube.com/watch?v=WJQT9-cQwIw
• Stolen Childhood (Documentary):  https://www.youtube.com/watch?v=Cprp-zhkDCM&t=2340s
• Brain on Fire (Movie):  https://www.imdb.com/title/tt3704700/

(Wendy Díaz  is a Puerto Rican Muslim writer, award-winning poet, translator, and mother of six, ages ranging from infant to teen. She is the co-founder of Hablamos Islam, a non-profit organization that produces educational resources about Islam in Spanish (hablamosislam.org). She has written, illustrated, and published over a dozen children’s books and currently lives with her family in Maryland. Follow Wendy Díaz on social media @authorwendydiaz and @hablamosislam.)

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