PANDAS and Pans Syndrome

What is PANDAS Syndrome?

I am very sorry and my heart goes out to you if you and your family have been affected by PANDAS. This is can be an extremely stressful time with a condition that can be difficult to manage. A lot of medical professionals do not recognize this as an actual diagnosis or condition. It is important to seek out professionals who have experience with PANDAS and PANS.

PANDAS is an acronym for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections.

PANDAS and PANS are syndromes resulting from an overactive immune response that causes inflammation.

About 1 in 200 children ages 3 to 12 may experience the sudden onset of symptoms associated with Obsessive Compulsive Disorder (OCD) and/or a tic disorder following a strep infection.

These symptoms are very noticeable and happen quickly within 2-3 days of the infection. The symptoms are significant and seem to happen overnight.

Symptoms of PANDAS can include:

• Physical motor tics and verbal tics

• Obsessive thinking

• Compulsive behavior

• Moodiness

• Rages

• Changes in personality

• Anxiety such as separation anxiety

• Age regression or behaving much younger

• Food restricting or change in taste

• Decline in math skills

• Changes in handwriting ability

• Sensory sensitivities

What causes PANDAS?

PANDAS is caused by streptococcal A (strep) bacterial infection.

This bacteria is very tricky and it tries to hide from your child’s immune system by making itself look molecularly similar to heart, skin, joint, and brain molecules. This way the bacteria can invade those various areas and attack the tissue.

Strep is not only found in the back of the throat. It can be in the ears, nose, and other parts of the body that the strep can enter. So if a throat swab does not detect strep, it does not mean that there has not been any exposure to the strep virus.

The immune system eventually detects the bacteria and attacks it but not before your child has experienced the symptoms of strep.

Inflammation results from the overreaction of the immune response that may cause swelling within the brain. This may often be diagnosed as Basal Ganglia Encephalitis.

Symptoms of strep:

• Sore throat Painful swallowing

• Red and swollen tonsils, sometimes with white areas of pus

• Tiny red spots on the area at the back of the roof of the mouth (soft or hard palate)

• Swollen, tender lymph nodes in your neck

• Fever

• Headache

• Rash

• Nausea or vomiting

• Body aches

What are the symptoms of PANDAS?

Sudden onset of the following symptoms after detection of strep A infection:

Obsessive-compulsive disorder symptoms (OCD)

Obsessions are unwanted intrusive thoughts, images, or impulses/urges that cause intense feelings of shame, guilt, and doubt. This can trigger uncomfortable levels of anxiety, including panic attacks (aka anxiety attacks).

Compulsions are behaviors or rituals that are used to decrease the intensity of the obsessions and anxiety. Compulsive behaviors can also be said to neutralize the feeling of anxiety caused by the obsessive thoughts and beliefs. But the compulsive behavior only provides short-term relief from anxiety.

Tics

Tics are sudden, uncontrolled, and repetitive movements or vocal sounds that are common with OCD, Tourette’s, and ADHD. There are 2 kinds of Tics, motor and vocal.

Motor Tics or simple motor tics include head twitching, eye blinking, nose twitching, facial grimacing, and shoulder shrugging. More complex motor tics include skipping, jumping, kicking, and smelling hands or other objects.

Vocal Tics include throat clearing, coughing, grunting, barking, and hissing. More complex vocal tics include yelling, making animal sounds, and repeating words and/or phrases.

Other symptoms include:

Separation anxiety, panic attacks, moodiness, rages symptoms of ADHD (inattention, hyperactivity, impulsivity), difficulty sleeping, joint pain, and changes in motor coordination such as difficulty writing and jerky physical movements.

These symptoms appear suddenly and get worse before they get better. Symptoms improve slowly with antibiotics but may persist for several weeks with ups and downs. Any new or subsequent strep infection will cause the symptoms to return. These are called flares that require continued treatment.

How is PANDAS treated?

If you believe your child could have PANDAS it will be helpful and important to seek consultation with a medical professional to first verify the diagnosis and then receive appropriate treatment.

Antibiotics

Your child’s doctor will take a swab from the back of the throat to test for strep. Results usually take just few minutes. If the test comes back positive for strep your child’s doctor will prescribe antibiotics.

Antibiotics will treat the strep infection and the symptoms of PANDAS will then diminish.

Steroids

Steroids are often given for a one week period called a "Steroid burst." This helps reduce body inflammation and can significantly reduce the symptoms.

Psychiatric Medication

Anti-depressant medications are also effective at reducing symptoms of anxiety and OCD. This helps dampen the physical and emotional effects of anxiety and increases a person’s capacity to cope with stressful situations.

Intravenous Immunoglobulin Treatment (IVIG)

IVIG consists of antibodies collected from donors at donation sites throughout the United States and the world. This treatment works to reset the immune system and has proven to be effective for autoimmune disorders.

Cognitive Behavioral Therapy (CBT)

Cognitive Behavioral Therapy (CBT) is a well-researched and highly effective form of talk therapy that focuses on learning more helpful ways of thinking and behaving.

You learn different ways of responding to the symptoms of OCD and to your feelings of anxiety.

CBT helps challenge and change unhelpful beliefs that cause anxiety by restructuring automatic thinking and changing the way you behave in response to obsessive thoughts.

CBT sessions also provide education on the symptoms of OCD and how to manage the emotional and physical symptoms of anxiety.

Replace toothbrushes

Replace toothbrushes and sterilize any necessary mouth device to get rid of any strep bacteria left on them. This will help avoid reinfection of the bacteria.

Can my child have OCD without PANDAS?

Yes it is estimated that about 1 out of 200 kids and teens can be diagnosed with OCD without having a strep infection.

What is PANS?

Pediatric Acute Onset Neuropsychiatric Syndrome (PANS) is diagnosed when there is a sudden onset of symptoms associated with Obsessive Compulsive Disorder (OCD) or food restriction when laboratory tests do not indicate a strep infection.

The cause of PANS is not known in the majority cases but is thought to be triggered by infections (other than strep), metabolic disorders, and other inflammatory reactions.

Treatment for PANS is usually the same treatment as PANDAS.

For More Information and for a list of specialists who treat PANDAS, visit pandasnetwork.org

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