PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. It is used to describe children who have a sudden onset of symptoms such as Obsessive Compulsive Disorder (OCD) and/or tic disorders, following a strep infection (namely “strep throat” or Scarlet Fever). It is a misdirected immune response resulting in inflammation of a child’s brain.
PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome. It is a newer term used to describe all cases of abrupt onset OCD, not only those related to strep infections but other bacterial, environmental, or viral triggers that might cause the faulty auto-immune reaction.
What are the symptoms?
- OCD (obsessions and/or compulsions)
- Severe separation anxiety (e.g. child can’t be on a separate floor of the home than parents)
- Generalized anxiety
- Developmental regression (temper tantrums, “baby talk”, changes in handwriting or artwork, loss of academic abilities)
- Irritability (sometimes with aggression)
- Difficulty concentrating
- Hyperactivity, ADHD symptoms
- Motoric hyperactivity, abnormal movements, restlessness
- Verbal tics
- Difficulty sleeping/insomnia
- Increased urination frequency and/or bedwetting
- Hypersensitivity to light or sounds, visual or auditory hallucinations
- Anorexia, refusal to eat
- Oppositional Defiance
Who can get PANS/PANDAS?
Anecdotal reports suggest that some children can acquire PANS/PANDAS symptoms in the first year of life; however, the average age of onset is 4-7 years of age.
How do I know if my child might have PANS or PANDAS?
If your child has had a sudden onset of at least 2 of the above symptoms listed, especially following an illness such as strep throat or mycoplasma pneumonia, that is not otherwise explained by a known neurological or medical disorder, then you may want to consult your pediatrician. Many parents whose children who are diagnosed with autism at a young age are finding that their children’s behavior is actually caused by immune dysregulation such as PANS/PANDAS. However, the most common manifestation is when some parents describe it as waking up one morning and “losing” their child to one who is totally consumed by anxiety and unexplainable irrational behavior.
Is there testing available?
Yes. The following tests are often used to aid the PANS/PANDAS in diagnosis:
- Strep swab and culture
- Anti dNaseB
- Lyme and Co-infections
- Epstein Barr
More advanced testing may include:
- Cunningham Panel
- Full Immune work up and subclasses
A high blood level of a strep antibody or other increased viral or bacterial titers alone does not confirm PANS/PANDAS, nor can a low blood level of a strep antibody or other bacterial and viral titers alone rule out the disorders. That is why it is critical to find a physician who is knowledgeable of the disorder to rule it out.
How is it treated?
Many children respond well to antibiotics like amoxicillin, azithromycin, and particularly with augmentin and other beta-lactam antibiotics, often initially in combination with a steroid. In addition, some families have sought further treatment options such as removal of tonsils and adenoids, IVIG, and plasma exchange (plasmapheresis).
I think my child may have PANS or PANDAS. Now what?
If you are a parent who suspects your child may be suffering from PANS/PANDAS, then you should consult your child’s pediatrician. The earlier the treatment is started, the better the long term outcome. Many physicians are not familiar with PANS/PANDAS and therefore we recommend you download this diagnostic flow chart from the Pandas Physicians Network and bring it with you to your appointment. You can also direct your physician to the National Institute of Health’s PANS/PANDAS website and the PANDAS Physicians Network website for further information regarding diagnosis, treatment, and ongoing research studies. If you feel your child may be suffering from this disorder, make sure your medical team takes you seriously. It is said that, on average, children suffer for 3 years and see approximately 8 providers before they are accurately diagnosed. Trust your intuition. For more information and resources visit the nation’s largest PANDAS non-profit organization www.pandasnetwork.com
Please note: We are not medical professionals and this is not intended as medical advice. Please consult your doctor for questions related to your child’s health.