PANS and PANDAS: Acute-Onset OCD in Children
Has your child suddenly developed intense OCD and anxiety? It may be a sign of pediatric acute-onset neuropsychiatric syndrome (PANS) or pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections (PANDAS).
What is PANS or PANDAS?
Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) is a childhood condition characterized by the sudden onset of obsessive-compulsive symptoms (OCD) and/or eating restrictions following a bacterial or viral infection, including COVID-19. These sudden changes often appear in combination with behavioral and neurological changes such as new fears, anxiety, depression, tics, changes in temperament, and sensory sensitivity that causes increased urination or sleep disturbances. Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) is a subset of PANS, but is linked to a strep bacterial infection.
Following a normal childhood illness such as a sore throat or a stomachache, a child with PANS or PANDAS may suddenly (what seems like overnight) start exhibiting signs of psychological distress. They might wash their hands excessively, suffer from fears they never had before, worry about feeling sick, refuse to eat food, and begin struggling in school. Your child may feel hopeless, anxious, be on edge, or feel like they’re on the verge of a breakdown because of the constant obsessive thoughts or tics.
Scientists believe that 1 in 200 children suffer from PANS or PANDAS, with an average age of onset between 4 and 10 years of age. PANS/PANDAS is an “episodic illness”, meaning symptoms can go away for a while after an infection is treated, but they can come back again, in what is called a flare-up or relapse of the disorder. These relapses usually occur when your child is exposed to another virus, another case of strep throat, or an environmental substance such as mold or allergens. Symptoms may increase in severity with every episode, or even last longer than the previous episode. With some children, their symptoms last for months, or even years, and can progressively get worse over time.
While it can be extremely distressing as a parent to witness your child suffer, it doesn’t mean that they will be impacted by PANS or PANDAS forever. A flare up does not last forever, and symptoms do eventually subside for most patients. In fact, some studies suggest that about 95% of kids will outgrow PANS or PANDAS by adolescence or young adulthood when their immune systems fully mature. In the meantime, there are steps you can take to help ease your child’s suffering.
Signs and symptoms of PANS and PANDAS
PANS/PANDAS is characterized by sudden onset of OCD and/or severe eating restrictions (refusing to eat certain or all foods), along with at least two other cognitive, behavioral, or neurological symptoms, such as:
- Anxiety such as excessive worry, irrational fears, separation anxiety, or panic attacks.
- Behavioral or developmental deterioration, such as having temper tantrums or a sudden loss of age-appropriate language skills.
- Emotional distress such as depression, suicide ideation, inappropriate emotional reactions, or dramatic mood swings.
- Irritability including aggression, lashing out, or defiance.
- Sudden decrease in school performance, along with symptoms of ADHD or a decline in math capability.
- Motor or sensory abnormalities such as tics, heightened sensitivity, and handwriting decline.
- Sleep disturbances such as night terrors, trouble falling or staying asleep, or new issues with bedwetting.
- Frequent urge to urinate, without the presence of a urinary tract infection.
The OCD that kids experience with PANS tends to differ from typical OCD symptoms as the obsessions or compulsions come on suddenly, usually over a day or two after onset of the initial infection. Typical OCD, on the other hand, usually develops more slowly over a period of time.
Causes and diagnosis
Some children can have 10 or more separate strep infections in their life and never suffer any adverse effects, while another child may get their first or second infection and end up experiencing all of the negative symptoms of PANDAS. Experts believe that some kids have a genetic vulnerability that makes them more likely to suffer from PANS or PANDAS. An infection leads to an abnormal immune system response that attacks certain parts of the brain, causing inflammation and an abrupt onset of symptoms.
PANS can be triggered by one or more infections, like the flu, Lyme disease, mycoplasma (a type of walking pneumonia), chicken pox, upper respiratory infections, and an unending list of viruses, including COVID-19 and its variants.
Getting a diagnosis of PANS or PANDAS can be difficult as the effect of an inflamed immune system on the brain is not always well understood by some physicians. Since there is currently no specific test to identify PANS or PANDAS, the condition can be frequently misdiagnosed. Being an advocate for your child is a necessity when pursuing a diagnosis of PANS/PANDAS.
If your child has a strep infection, your doctor will likely start a course of antibiotics. They may also ask for a strep throat culture or blood work that could show an immune response or another type of infection, such as Lyme disease, Epstein Barr virus, or a Coxsackievirus.
With the outbreak of the COVID-19 pandemic, however, more people have suffered mood changes, muscular dysfunction, and psychological distress as side effects of infection. This has validated what many parents already know about PANS and how it can affect a child.
The widespread psychological reactions to coronavirus infection have also led to an increase into research into why pathogens can affect the brain of some people but not others, which in future will hopefully make PANS or PANDAS easier to diagnose.
Helping a child with PANS/PANDAS
When your child is experiencing OCD or anxiety symptoms of PANS or PANDAS, the whole household can feel the effects. Everyone may feel that their lives have been interrupted and also feel the need to adapt to your child’s OCD rituals, whether it be their hand washing, fears about germs, or intrusive thoughts, for example. As a parent, though, it’s important to be caring and understanding, and not overly criticize or blame your child, which may only lead to increased anxiety and exacerbate the symptoms of OCD.
Try to empathize with what your child is feeling, reassure them that they will get better, and encourage them to face their fears and deal with their emotions. The message you want to send is: “I know you’re not feeling well; I know you are scared and anxious. But I’m going to be here to help you get through this.”
Studies have shown that supportive parents, rather than overly critical parents, can help their children reduce anxiety symptoms. However, it’s important to know that you cannot completely prevent a child from experiencing OCD or anxiety symptoms, either. Your child will need to learn how to deal with their worries and anxieties. For example, if your child has separation anxiety at night and you decide to sleep with them, you’re giving in to their fears rather than enabling your child to develop the necessary coping skills.
Repeated exposure to their fears in a controlled way can, in fact, have some beneficial reduction in the stress and anxiety they feel. Exposure and Response Prevention (ERP) therapy is commonly used to reduce OCD symptoms. It works by gradually exposing your child to the fears that trigger their OCD while they learn to resist the urge to complete the compulsive rituals. By starting with a situation that only causes mild anxiety, your child can learn to tolerate their fear before moving on to another situation that causes them slightly more anxiety, and so on.
The following tips can also help you and your child manage the stress and anxiety that comes with PANS/PANDAS either during the initial illness or a flare-up.
Tip 1: Talk to your child about how they’re feeling
One of the most effective ways to calm down when you’re stressed is to talk face-to-face with someone who cares about you. For you as an adult, you may turn to friends, co-workers, or loved ones. Your child will want to turn to you, so make a point of talking with them to understand how they feel.
If, for example, your child is experiencing separation anxiety as part of their OCD—a common response to PANS or PANDAS—talking through what they’re afraid of, providing reassurance, and making a plan to deal with their fears can help them react more positively. Try asking open-ended questions like: “How do you feel today?” instead of a question like “Are you feeling anxious?” that requires only a “Yes” or “No” answer. Such close-ended questions tend to feed the cycle of anxiety and stress that your child is feeling.
Additionally, let your child know that you are proud of them for facing their fears, obsessions and compulsions, and let them know that the more they deal with facing those fears, the less they will have anxiety about them.
Focus on the positive
Having your child see the positives in their life can be really beneficial for the way the child feels about themselves and how they deal with their illness. Encourage your child to take a few minutes each day to focus on the positive aspects of their life, things they’re grateful for—no matter how small. Also, having your child read about how other kids have overcome adversities can make them feel less alone in their symptoms and illness.
Tip 2: Self-soothe with deep breathing
Breathing matters! During an anxious time, children are less likely than adults to be able to breathe properly. Kids need to learn how to breathe through their stress. When your child is stressed out, their body goes into “fight or flight” mode, their heart races, and their breath becomes shallow (almost feeling like they’re not getting enough air). Deep breathing can help your child feel calmer and reduce their anxiety.
Using bubbles can be a fun way to help kids learn how to deep breathe. To blow bubbles they need to use their diaphragm, and the diaphragm is the part of the body that has to be used in deep breathing. Have your child practice taking in a long, deep breath through their nose, holding the air in their belly for a count of two, and then slowly blowing bubbles as big as they can. Then repeat the process over until the anxiety has passed. This can help kids learn to use breath to quickly soothe themselves.
The 5-5-10 method of breathing can also be helpful. This is a method where you take a breath for 5 seconds, hold it in for 5 seconds, and then release the breath through your mouth for 10 seconds. Or take a “snake breath” by breathing in and filling your diaphragm and then slowly hissing out the air through your teeth like a snake. Do the breathing exercise along with your child and make a game of who can take the longest to hiss out the air. All of these activities help oxygenate the blood and improve the way the brain responds to stress.
Tip 3: Distract with calming activities
Distraction is a proven method to help people, especially children, cope during a stressful time. Distractions work in that they help divert the child’s attention from feeling anxiety and stress so they can be more relaxed. Having your child play a board game with you or complete a puzzle will help them refocus their energy into an activity and forget about the stress they may be feeling.
Other calming activities for children include drawing, painting, listening to music, or playing with a friend.
Tip 4: Encourage exercise
Exercise has long been known to help ease and lessen symptoms of stress, depression, and anxiety in adults, and it is no different for children. Exercise can be effective in that it forces the child to focus more on the actions they are doing—whether it be running, cycling, or playing soccer, for example—instead of the things they are feeling. The break from their obsessions and compulsions can also help a child feel a sense of increased command over their symptoms.
Spending time outside in green spaces can also be a calming, soothing experience for an anxious child. Encourage your child to spend time exercising outdoors or try hiking or walking in a park or woodland together.
Tip 5: Be a good role model
Children are sponges. They soak up experiences around them and mimic the behaviors of those closest to them—including how you as their parent manage stress and anxiety in your own life. By handling stressors in a positive way, you can set a positive example to your child.
Rather than using alcohol or drugs to cope, for example, or flying off the handle when things get stressful, let your child see you manage stress and anxiety in more positive ways by:
- Exercising regularly.
- Practicing a relaxation technique, such as deep breathing, meditation, or yoga.
- Getting enough sleep.
- Eating a healthy diet.
Antibiotics are the primary treatment in the fight against PANS and PANDAS. If a child has been found to have a strep infection, antibiotics are definitely needed to treat the illness. But be aware that if your child does not have a positive strep test, doctors may be much less likely to prescribe antibiotics, which is where many parents of children who present with PANS symptoms feel like they run into a brick wall.
Antibiotic prophylaxis may also be used to prevent infections from potential illnesses your child could come in contact with that could cause a flare up.
Steroids can help ease inflammation in a child’s brain and also assist in reducing symptoms. However, some children can have a negative response to steroids and become much more aggressive or experience greater severity of tics.
Cognitive Behavior Therapy (CBT) can teach kids better ways to cope with the psychological symptoms of PANS, how to face their fears, and how to calm and relax their mind and body.
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Tonsillectomy is an interesting, but controversial, treatment option for PANS and PANDAS. In one study, researchers found that when tonsils are removed, the symptoms go away completely for many patients. However, it was not a controlled study and so some experts consider the evidence too incomplete to determine effectiveness of a tonsillectomy.
Intravenous immunoglobulin (IVIG) , which is a therapeutic exchange of blood plasma, may be used for children who get no relief from the other treatments. IVIG is costly, though, and most insurances do not cover the procedure.
Non-steroidal anti-inflammatory drugs (NSAIDS) like Advil and Motrin are often given to patients because of the anti-inflammatory properties in the drugs.
There are also some supplements that may have a positive effect on children with PANS.
- Giving the child an Omega 3 fish oil supplement may help to reduce inflammation.
- Some studies have shown the use of probiotics may be beneficial as it helps with increasing good gut bacteria, which in turn can have a positive effect on the mind.
- Some parents have found that turmeric or curcumin supplements can be beneficial because of their natural anti-inflammatory properties.
- Likewise, vitamin D supplements may also have anti-inflammatory properties and have been prescribed to children with auto-immune responses for other issues.
Taking care of yourself
PANS can be very traumatic for families, especially the primary caregiver. Many parents feel neglected by the medical community while their child continues to suffer. Studies show that parents caring for children with PANS often face an extreme burden, especially in severe cases, and are more likely to experience high levels of anxiety.
Left unchecked, the burden of caregiving can take a heavy toll on your mental, emotional, and physical health, even leading to burnout. As your child’s primary caregiver, if you neglect your own health and welfare, it will affect not only yourself but also your child and the rest of the family.
It’s imperative you take steps to ease the burden of caregiving and prevent caregiver burnout.
- Take a break. Make sure that you have time where you can be calm and alone to collect your thoughts and try to decompress. This could be as simple as taking a walk by yourself or going to the gym, just to get away for a while without the constant reminder of your child’s illness.
- Practice meditation. Meditating breaks the cycle of stress and allows you to focus on the moment instead of worrying about the past or the future. Try one of HelpGuide’s free audio meditations.
- Find Support. There are many support groups for parents, caregivers and family members of kids with PANS or PANDAS. Talking to others who are experiencing the same issues can help you to feel less isolated and enable you to access new coping tips.
- Start a Journal. Journaling can be a positive and cathartic way to release pent-up frustrations and emotions. Set aside a few moments each day to write down your thoughts in a notebook or on a phone or tablet.