Parents and Families
Living with PANDAS
Learning that your child or loved one has been diagnosed with PANDAS/PANS is not easy. The most important thing is to be supportive and aware of the pain and confusion that they may be experiencing. With early diagnosis and treatment, patients have a higher chance to recover and heal from symptoms. Help advocate for your loved one to get the right kind of treatment, especially if they are unable to communicate for themselves. Educate family members, your child’s school, neighbors and healthcare providers through reliable sources.
Familiarize yourself with what we currently know about PANDAS/PANS, including causes, signs and symptoms, diagnosis, treatments and other frequently asked questions.
Parents: Frequently Asked Questions
When your child’s personality seems to change overnight, we know you have questions. We’ve collected a few commonly asked questions from parents and families dealing with PANDAS/PANS.
What is PANDAS/PANS?
Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep (PANDAS) and Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS) are neuropsychiatric syndromes triggered by a misdirected immune system response.
What causes PANDAS/PANS?
Patients may experience symptoms after a “strong stimulant” to the immune system, such as strep infection, flu, pneumonia or even the common cold. In patients with PANDAS/PANS, the immune system is thought to mistakenly react and cause an autoimmune reaction that causes inflammation in the part of the brain responsible for motor control, executive functions, behaviors and emotions. This reaction may cause neurological, psychological and cognitive symptoms as a result of neurological inflammation.
What are typical PANDAS/PANS symptoms?
PANDAS/PANS can produce sudden, uneven and unusual symptoms in children, typically aged 4 to 10 years. But it can also occur in teens, and new research indicates that it can occur into young adulthood as well. Symptoms may include separation anxiety, obsessions and compulsions, inability to tolerate certain activities, tics, involuntary movements or hyperactivity. Caretakers may also observe changes in handwriting and academic performance, reduced attention span, changes in eating and sleep habits, increased sensory sensitivity and other changes in personality or behavior.
What types of treatments are available for PANDAS/PANS?
The following treatments can help alleviate PANDAS/PANS symptoms:
- Antibiotics, including penicillin, Augmentin, Cephalosporins and Azithromycin to treat a current infection and prevent recurrent infections.
- IVIG, an intravenous pooled blood product composed of immunoglobulins, that is used to treat immune deficiencies, encephalitis and other medical conditions.
- Plasmapheresis (apheresis) or plasma exchange (PEX), a process during which harmful auto-antibodies are removed from the blood system.
- Steroids, which likely reduce the inflammation occurring in the child’s brain.
- Tonsillectomy and adenoidectomy, which should both lower the chances of a person contracting strep and, if there is a latent infection in tonsil crypts, this will also be addressed. These are being studied to possibly calm overactive immune cell production.
- Cognitive behavioral therapy or exposure and response prevention, which may be beneficial for a recovering PANDAS child.
Why is it so difficult to find a diagnosis and treatment for my child?
There is limited research on PANDAS/PANS, and the condition is often misdiagnosed. Additionally, PANDAS/PANS may occur with other autoimmune disorders, immune deficiency or other neurological or psychiatric disorders. This can make treatment and management more complex. PANDAS/PANS are sometimes overlooked by clinicians who assume that there is not an underlying medical cause for the patient’s psychiatric symptoms.
Discover the latest news and information pertaining to the treatment, diagnosis and awareness of PANDAS/PANS.
Downloadable Guides and Resources
Sample Letters for Families
You can use these frameworks to craft a letter for the teachers, administrators and staff who interact with your child at school. Copy and paste the text, then customize them for your personal use.
Websites and General Articles
OCD Education Station: Coping with OCD in the School
Wrightslaw: Special Education Advocacy and Law
Preparing the School for Your Child with Tourette Syndrome: Tips for Tics in the School Environment
Even if you don’t have a 504 plan or IEP in place, you can still talk to the teacher(s) and administration about what would make school more comfortable for your child and for you.
Some suggestions are:
- Call the principal and say you want to be notified when a classmate is absent due to strep. If there are siblings, you can request the same for their classes as well. The school will not be able to give you specific names due to privacy.
- Talk to the teacher about allowing frequent bathroom breaks if frequent urination is an issue. If you don’t discuss this, the teacher may have class rules about how often and when a child is allowed to use the bathroom.
- Establish a ‘code’ with the teacher. Perhaps if the child puts a certain object or piece of paper on their desk or the teacher’s desk, it will signal the teacher that the student is overwhelmed and needs a break from the classroom.
- Get permission for your child to use a water bottle in the classroom to prevent germ exposure from water fountains.
- Look back at older writing journals for possible handwriting changes. This may include margin drifts and legibility issues. These journals may be kept in the classroom.Photo credit: NIMH
You are not alone in this fight. Other families affected by PANDAS/PANS have shared their personal stories to help raise awareness of PANDAS/PANS and encourage others whose lives are affected by these disorders.
Help us continue to support the children and adults living with PANDAS/PANS.