If your child is the one out of every 200 children with PANS/PANDAS, you know how scary and frustrating the changes in behavior that occur during a flare can be. But there are some steps you can take to help your child through a flare.

What is PANS/PANDAS?

PANS is an umbrella term that stands for Pediatric Acute-Onset Neuropsychiatric Syndrome. PANDAS, or Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, is like PANS, but its onset is specifically triggered by strep infection.

The PANDAS Network explains PANS and PANDAS as inflammation in the brain that results in sudden and dramatic behavioral changes. While strep infection is the most common cause (PANDAS), other bacterial or viral infections can also cause this brain inflammation (PANS). Regardless of trigger, both of these forms of autoimmune encephalitis result in sudden, acute onset of startling neuropsychiatric symptoms for children and their caregivers.  

What Are Common Symptoms?

Because PANS/PANDAS affects a child’s brain, its symptoms present the same as other mental health disorders. Obsessive compulsive disorder, anxiety, and extreme food avoidance commonly occur with PANS/PANDAS.

Other behavioral symptoms can include mood swings, difficulties paying attention and related challenges in school, and increased sensitivity to light, sound, or smells.

While a child might exhibit behaviors related to a condition such as anorexia or attention deficit disorder, a sudden onset and a relapsing-remitting pattern often means that PANS/PANDAS could be the underlying cause.

What Can Cause a Flare of Symptoms?

When symptoms appear or reappear suddenly, the person with PANS/PANDAS is said to be experiencing a flare. Parents often share stories of putting their child to bed and everything seems fine. But by the next morning, the child’s personality is dramatically different.

A flare can often be triggered by any number of things. A child can develop another infection, like the initial STREP infection. Stress, other allergies, or gut imbalances can also sometimes cause flares. When this happens, a child might, for example, experience increased OCD symptoms, which leads them to engage in rituals or ask repeated questions to calm the obsessive worrying thoughts going through their mind.

What Can Help During a Flare?

It can be scary and worrying for both the child and the parents when a child experiences a flare, especially if the child has only recently developed PANS/PANDAS. The fear and anxiety of PANS/PANDAS is twofold. Anxiety is often symptomatic of OCD and other behavioral symptoms of PANDAS. A sudden onset of these anxious feelings comes with another layer of fear when the child doesn’t yet understand what is happening to them during a flare.

Families experience high levels of stress when a child has PANS/PANDAS. In fact, parents of children with PANS are reported to have an extremely high caregiver burden on par with that of people who care for an Alzheimer’s patient. But there are several steps you can take to help your child during a flare.

1.       Use any medical intervention that your doctor has prescribed.

Since PANS/PANDAS is caused by inflammation in the brain, doctors often recommend anti-inflammatory medication as part of a treatment plan. Antibiotics can also help if infection is identified as the trigger of a flare. IVIG infusions are another common treatment. Work with your child’s doctor on the best treatment protocol for your child.

2.      Stay calm and regulate yourself.

As a parent, it can be hard to remain calm. When you worry about your child and feel helpless, it can be easy to forget that your child’s challenging behavior is not something they are doing on purpose. Take a few deep breaths to calm yourself down. If a flare is ongoing, make sure to take regular time to take care of yourself so you can continue to stay regulated. It will be much easier to navigate your child’s mood swings and behavioral changes when your own emotions are in check.

3.      Help your child feel safe physically and emotionally

Just being a calm presence nearby might help your child feel safer. Validate their feelings and encourage them to talk about what they are experiencing. It can be helpful to blame the symptoms on the disease, and not the child. If a stressful situation or sensory overstimulation has triggered a particularly difficult situation, moving the child to a quieter, calmer space can help them feel more in control and safe. 

4.      Teach your child ways they can manage the situation during a flare

Help your child come up with a word or phrase they can share with you to let you know they are beginning to experience a flare. Practice calming techniques like deep breathing with them, so they can learn to use these tools even in situations when you’re not present. It is often helpful to plan ahead and have these conversations between flares.

5.      Don’t be afraid to seek professional help!

For many years, mental health challenges were stigmatized, but those attitudes are beginning to change. Neuroscience is learning more and more about the brain, how it functions, and ways to help disorders such as PANS/PANDAS. If your child experiences flares frequently or symptoms are severe, a psychiatrist or therapist can often help provide specialized tools. Online resources, such as the PANDAS Network, provide information and can help connect you to PANS/PANDAS literate doctors.

There is no denying that PANS/PANDAS is challenging for families. But with the right support, information and tools, you as a parent can play an important role in helping your child successfully survive a flare today and in the future.