What is PANDAS and Why Should You Care?

Does your child have PANDAS? If your child:

  • Has recently had strep
  • Has stopped eating
  • Has started showing obsessive or compulsive behaviors
  • Won’t leave your side
  • Has twitching muscles
  • Is moody
  • Has angry tantrums including kicking or biting
  • Can no longer write legibly

Then your child may have PANDAS. Read on to learn more.

What is PANDAS?

PANDAS is a condition that you may or may not have heard about. Because it is a serious medical condition in children, it is receiving more and more attention in newspapers, magazines, and medical journals.

So why should you know about PANDAS? Because the cause of PANDAS is streptococcal infection, more commonly known as strep. If your child has ever had a strep infection or is even exposed to strep at school or in other public places, you need to know about PANDAS.

It is also very important that you know about PANDAS if anyone in your family has ever been diagnosed with obsessive-compulsive disorder (OCD).

This article will explain what PANDAS is, how it is diagnosed and treated, and how you can help your child to manage its symptoms.


What You Need to Know About PANDAS

PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. This condition is a reaction in the body that causes the immune system’s antibodies to attack normal cells in the brain.

Because the symptoms of this condition are similar to other known mental health disorders, it is easy to overlook the fact that those symptoms are caused by bacteria. If you know how this condition develops, you as a parent will be able to tell the difference between the sudden onset of PANDAS and the onset of other psychiatric conditions in your children.

This is important because PANDAS is treatable and manageable if diagnosed and treated early.


What Causes PANDAS?

PANDAS happens because streptococcal bacteria is able to disguise itself to appear similar to normal molecules on the outside of human cells, particularly those in the brain, heart, joints and skin. This allows the streptococcal bacteria to spread itself further into the body.

The bacteria do this in order to survive. Eventually, the immune system detects the bacteria and attacks it to remove it from the body. Since the bacteria is disguised, however, the antibodies of the immune system also end up attacking normal calls along with the bacteria, causing the reactions that are characteristic of PANDAS (Saltz, 2019).

It is important to note that neuropsychiatric symptoms can also occur suddenly with the onset of a related condition, known as Pediatric Acute-onset Neuropsychiatric Syndrome (PANS).

This syndrome happens when the psychiatric symptoms are caused by infectious agents other than streptococcal bacteria, such as H1N1 flu virus (swine flu), mononucleosis (mono), mycoplasma, or Lyme’s Disease (International OCD Foundation, 2020).


Who is Affected by PANDAS?

The reason PANDAS is referred to as a pediatric condition is that it primarily affects children between about the age of 3 and puberty. It is rare to react to a streptococcal infection after the age of about 12, but researchers acknowledge that the condition could occur on rare occasions in adolescence.

Adults do not react to streptococcal infections, so they are not prone to PANDAS. It is not known if there are adolescents and adults who had PANDAS as children who continue to have psychiatric symptoms caused by the disease (NIMH, 2019). Future research may examine this question further.

Children who have had PANDAS once are susceptible to developing it again following future streptococcal infections.

This knowledge helps parents, medical professionals, and school staff to prepare should a child experience another streptococcal infection. It also ensures that a child who is at increased risk of developing PANDAS receives treatment as soon as strep is identified.


What Are the Symptoms of PANDAS?

The symptoms of PANDAS are not unique to the condition, which is the main reason why PANDAS may be missed as a diagnosis. The difference between other causes of neuropsychological symptoms and PANDAS is the very sudden onset of these symptoms following a streptococcal infection. These symptoms are:

  • Obsessive compulsive disorder – a child may obsess on certain thoughts, such as obsessing over certain toys, or may act compulsively in odd ways, such as repeatedly washing hands or turning lights on and off.
  • Severe separation anxiety – a child will not want to leave parents and may cry or tantrum when forced to do so, even though they may have separated without difficulty in the past.
  • Tics or odd, purposeless motor movements – a child may twitch or move a body part in an odd way for no reason and with no control.
  • Changes in eating patterns – a child may stop eating or may severely restrict their eating to certain foods only.
  • An increase in urinary frequency – a child may have to go to the bathroom all the time or may not make it to the bathroom in time.
  • Moodiness and irritability
  • Sudden episodes of rage – may hit, kick, bite, use inappropriate language.
  • Anxiety or panic attacks
  • Sudden decline in handwriting ability (International OCD Foundation, 2020)

Does PANDAS Cause OCD?

There are some basic differences between Pediatric OCD and the rapid onset type of OCD that PANDAS causes. The symptoms of Pediatric OCD usually appear gradually between the ages of 8 and 12. The symptoms of PANDAS OCD appear very suddenly following a streptococcal infection and usually affect children between the ages of 3 and around 14.

Children with Pediatric OCD can display a wide range of symptoms, including various obsessions, compulsions, and chronic anxiety.

Children with PANDAS OCD usually displays the specific set of symptoms listed above.

While the actual cause of OCD is unknown, researchers believe that Pediatric OCD has genetic roots and possible involvement of a certain area of the brain, while PANDAS is caused by the autoimmune reaction against the body following strep.

While PANDAS may not cause typical Pediatric OCD, PANDAS does affect certain brain functions that help to control behavior (Thienemann, 2018). These functions include:

  • Executive Function – this includes working memory, organization, and shifting between cognitive sets
  • Language Processing Skills – these include the ability to understand others, express one’s self, label feelings, and form verbal thoughts in the mind.
  • Emotional Regulation – the ability to control or set aside feelings to accomplish a task or goal.
  • Cognitive Flexibility – the ability to shift thinking to allow flexibility depending on the situation.
  • Social Skills – the ability to interact with others appropriately based on the situation.

When PANDAS is present, all of these skills are affected to a certain extent, resulting in the behavioral symptoms listed above.


What Should I Do if I Think My Child Has PANDAS?

If you suspect that your child may have PANDAS, contact your child’s doctor right away.

Explain your suspicions and ask to have your child tested for a streptococcal infection. Your doctor may not know a lot about PANDAS and may refer to you a specialist who knows more about PANDAS or has more experience treating strep.

If this happens, don’t be surprised, but don’t let your doctor tell you that it isn’t PANDAS until your child has been tested for strep. If there is no indication of strep, then your child’s symptoms are not caused by PANDAS, but they could be caused by PANS or other autoimmune reactions.

If your child has not had strep, make sure your doctor tests for other autoimmune reactions.

The resources listed at the end of this article may help you to educate your child’s doctor about PANDAS.


How is PANDAS Diagnosed?

PANDAS is diagnosed if the symptoms of PANDAS listed above appear soon after an active streptococcal infection. To be accurate, your doctor must test for strep within 3 weeks of the onset of the infection.

The test for a streptococcal infection is a throat swab that is then swiped and grown in a petri dish to see if the bacteria appear. When this test is negative and strep is still suspected, a blood test can be completed to confirm the presence or absence of strep.


How is PANDAS Treated?

The following treatments are frequently used to treat PANDAS in children:

Antibiotics

Once PANDAS is confirmed, the infected child will need to receive antibiotics to kill any active infection. Some children respond quickly to antibiotics, but it takes 1-2 weeks on average for the symptoms to improve. It may take some trials of different antibiotics to find one that is effective.

Anti-inflammatory Medication

Children who have PANDAS may also require treatment for inflammation to help the autoimmune reaction to subside. Non-steroidal anti-inflammatory drugs (NSAIDS) may help relieve the symptoms.

Children with severe symptoms may require a course of steroid treatment to help calm the immune system. The steroids used for this type of treatment are used short term and are safe for children.

Cognitive Behavioral Therapy

The symptoms of OCD that children develop as a result of PANDAS must be managed, even if they end up being temporary.

Cognitive Behavioral Therapy has been shown to be effective in the treatment of OCD symptoms. This type of therapy teaches children to recognize their patterns of thinking that are obsessive or compulsive and to come up with strategies to change their thought patterns to better adapt to their circumstances.

Exposure and Ritual Prevention Therapy, where a child is exposed to the thoughts, objects, or situations that trigger obsessions and then taught how to make a choice not to do a compulsive behavior, has been found to be particularly effective in treating OCD resulting from PANDAS (Stewart & Murphy, 2010).

Children who need this kind of therapy receive it from trained counselors and exposure to OCD triggers is completed in controlled counseling sessions until the children are ready to apply what they have learned to real life triggers.

If a case of PANDAS is resistant to these treatments, the following additional treatments may be required. These treatments have side effects that may be dangerous for children, so they are only used if other treatments have not been effective or if a child’s symptoms are so severe that they are unable to function and/or a danger to themselves (Shroff, 2018):

Anti-depressant Medication

A particular type of anti-depressant medications, called Selective Serotonin Reuptake Inhibitors (SSRI), have been found to be effective in treating the symptoms of Pediatric OCD.

Children with PANDAS OCD may be more sensitive to the side effects of SSRI medications, but may benefit from treatment with SSRIs if they are introduced in smaller doses. The side effects that may occur in children who use anti-depressants must be monitored very closely as sometimes the side effects are worse than the symptoms.

Any parent who is considering SSRI treatment for their child should have a frank discussion with their child’s physician about the possible benefits and side effects of anti-depressant medication.

IVIG

Intravenous Immune Globulin is a treatment consisting of human blood that contains antibodies that will help to “reset” a child’s immune system. This treatment is administered as an IV infusion.

Plasmapheresis

In this treatment, a machine is used to remove a child’s blood from the body and filter out the antibodies that are attacking the brain. The clean blood is returned to the body after filtering.


How Do I Manage the Behavior Symptoms of PANDAS?

The symptoms of OCD that occur with PANDAS are not exactly like the symptoms of Pediatric OCD. They occur suddenly and can be severe, causing extreme stress within the family.

A child with PANDAS does not behave normally and does not respond to typical parenting.

The first and most important thing to remember when dealing with a child with PANDAS is that the child’s behavior is not voluntary or intentional. The behavior is caused by the disease and the child does not have control of their actions. Keeping that fact in mind, here are some things you can do to manage behavior caused by PANDAS at home (Thienemann, 2018):

Have realistic expectations.

Your child may not be able to respond to your directives the way they usually do. They may also not be able to stop the behavior that you find objectionable. Before you deal with a given situation, step back and determine if your child can be taught at that given moment and if it is necessary for your child to meet your demands right then and there.

Have empathy for your child.

If you felt the way they do, you’d probably be screaming too.

Validate your child’s feelings

When your child is having a melt down over a situation, validate their feelings instead of just telling them to stop. Help your child to define what the problem actually is and work out a solution to the problem.

Avoid setting demands and limits that your child just can’t meet.

You will be setting up your child for failure if you do this.

If your child is experiencing rage, do not punish your child.

While your child might be misbehaving, they are not capable of understanding the reason for the punishment. It will not work and may make the rage worse. Try distracting your child instead by changing the subject or diverting them to another activity.

If your child is not eating, do not force them to eat what everyone else is eating.

However, do try to get them to take in some calories. Protein drinks like Ensure may help until your child is able to eat again.

Allow your child to sleep close to you.

Your child may have significant difficulty sleeping, particularly if they are experiencing separation anxiety. Allow your child to sleep in proximity to you so that they know you are there. This doesn’t mean you have to let your child in your bed if you don’t want to. Sleeping with the bedroom door open may suffice, or setting up an extra bed in a bedroom to allow you to sleep in the same room with your child may work until symptoms subside.

Protect your other children.

If your child’s behavior is so bad that your child is a danger to self or to the rest of your family, take the measures you need to take to protect your other children and contact your child’s doctor immediately. Your child may require hospitalization if the condition is this severe, but this is always a last resort.


What Should I Tell My Child’s School?

Children with PANDAS usually miss some school. When they are able to attend school, they will likely not be able to keep up with the pace and demands of school that they are normally able to handle. As a parent, it is very important that you maintain contact with your child’s school throughout the course of your child’s illness.

If your child has an active streptococcal infection, your child should not attend school until your child’s doctor clears your child to return to school. If you anticipate that your child will be absent from school for a prolonged period of time, work with your child’s teacher to help your child keep up with required work.

Once your child is free from infection and able to return to school, have a discussion with your child’s teacher, the school principal, the school guidance counselor, and the school’s program support teacher regarding your child’s condition.

If your child already receives special education services, make sure to talk to your child’s special education teacher and any other special education support personnel that work with your child. Make sure that everyone who works with your child knows what your child’s behavioral symptoms are and how these should be managed.

Also make it clear that your child is receiving treatment for these symptoms and emphasize that your child is showing these behaviors due to a medical condition and is not misbehaving on purpose.

Your child may need accommodations to help them function in school until the symptoms of PANDAS subside. If your child already receives special education services, these accommodations may be provided by revising your child’s Individualized Education Plan (IEP).

If your child does not receive special education services, accommodations may be provided through a 504 plan. Some of the accommodations that your child may need while battling PANDAS symptoms include (Thienemann, 2018):

  • shorter assignments
  • less homework
  • preferential seating (desk near the teacher or near the front of the class)
  • a quiet place to rest or take a nap
  • a “safe place” to help calm anxiety or melt downs
  • extra help in small groups or in a resource room to help with executive function issues
  • Adaptive physical education or a doctor’s excuse from physical education
  • Extended time on tests
  • A scribe for tests or assignments where handwriting legibility is important
  • Assistive technology to compensate for poor handwriting and impaired processing skills
  • Occupational Therapy services to help with handwriting problems

How Can I Help My Child at Home?

In addition to the suggestions given above regarding the management of behavioral symptoms, these tips may help you and your child while PANDAS is active:

Scale back the number of chores your child is expected to do.

Instead of giving your child a list of several tasks, give them one task at a time to complete.

Write down a schedule for your child so your child knows what to expect.

You may want to use pictures for this schedule if your child is not proficient at reading. Place this schedule someplace where your child will see it frequently and will know what is coming next.

Provide your child with some sensory adaptations to assist with calming and sleep.

A weighted blanket, soothing music, and low lighting may help. A play tent where your child can go to shut out the environment may also help. If your child is experiencing significant sensory processing difficulties, ask your doctor or your child’s school about an occupational therapy evaluation for sensory processing problems.

Make sure to “take a break” for yourself when you need to.

PANDAS is a stressful condition and your child will not benefit from a parent who is frazzled. Try to arrange for someone you trust to care for your child while you have some down time. If there are two parents in your home, take turns caring for your child.


What is the Latest Research on PANDAS?

PANDAS and the related condition PANS are receiving more publicity in the medical world over the past year or two. Recent articles written for medical professionals have focused on educating medical professionals regarding what PANDAS and PANS are and how they should be treated.

Since PANDAS and PANS were little known to many medical professionals before, this burst of publicity about the diseases has put these conditions on the radar of many “front line” medical workers, such as primary care physicians, nurses and nurse practitioners, psychologists, social workers, occupational therapists, and medical technicians (PANDAS Network, 2018).

Additional research is also being conducted to confirm that it is indeed an attack on the immune system by streptococcal infection that causes PANDAS. Once a controversial theory, preliminary results of research in progress is confirming that this is indeed the case.

Recent research has also focused on pinpointing the specific symptoms and medical conditions that may result from PANDAS/PANS. An Italian study of 30 children with recent diagnoses of PANDAS or PANS revealed a significant number of children also had cardiac involvement and that children who have been diagnosed with PANDAS or PANS should receive a cardiac evaluation along with other medical tests (Murciano, et. al., 2019).

Another study found that common polymorphisms on mannose-binding lectin, a component of the body’s natural immune system, is significantly associated with PANDAS (Celik, et. al., 2019). A third study found high rates of streptococcal infections and other immune-mediated disease in patients with childhood onset OCD, as well as clustering of these conditions in families (Westwell-Roper, et.al., 2019).

These studies suggest that susceptibility to PANDAS may be genetic and OCD resulting from PANDAS may occur in families. They also suggest that the health problems associated with PANDAS may be more significant than previously known.


Resources for Parents

The following resources contain information for parents, medical professionals, school staff, and other adults who may care for children with PANDAS:

  1. PANDAS Network – this website contains numerous links to research and articles about PANDAS.
  2. International OCD Foundation – the IOCDF provides resources regarding all types of obsessive-compulsive disorder in children and adolescents, including PANDAS related OCD.
  3. PANDAS Physicians Network – this website contains diagnostic guidelines, treatment options, and research regarding PANDAS that may be of interest to your physician. There is also a family resources page included.
  4. A Parents’ Guide to PANDAS, PANS, and Related Neuroimmune Disorders – this paperback book contains information on symptoms, diagnosis, treatment, and strategies for PANDAS.
  5. Brain Under Attack: A Resource for Parents and Caregivers of Children with PANS, PANDAS, and Autoimmune Encephalitis – another book with comprehensive information for parents regarding PANDAS.

Parent support groups also exist locally for parents of children with PANDAS. Ask your doctor or therapist about support groups in your area.

PANDAS is clearly a serious medical condition that could compromise your child’s life if not diagnosed and treated correctly. If your child suddenly displays any of the symptoms of PANDAS during or shortly after an illness, contact your child’s doctor and have them tested for PANDAS as soon as possible.

References

Categories Anxiety

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