What is PANDAS?
PANDAS stands for Paediatric 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 Paediatric 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.
- PANDAS affects as many as 1 in 200 children.
- Average age of onset is around 4 – 7 years old
- Can get better, especially with an early diagnosis
- Symptoms are relapsing and remitting
- Not all children have all of the symptoms
- Its medical; symptoms are not behavioral
What are the symptoms?
Symptoms are relapsing and remitting. Initial and subsequent triggers can be different. Not all children have all the symptoms, but they can include the following:-
- Anorexia (refusal to eat)
- Anxiety / Separation Anxiety
- Developmental and Age Regression (changes in handwriting or loss of academic abilities)
- Hyperactivity, ADHD symptoms, Concentration Difficulties
- Sensory Sensitivities or Hypersensitivity (to light or sounds, visual or auditory hallucinations)
- Increased urination frequency and/or bedwetting
- Irritability (sometimes with Aggression) / Oppositional Defiance / Temper Tantrums
- Motoric Hyperactivity, Abnormal Movements and/or Restlessness
- OCD (obsessions and/or compulsions)
- Personality Changes
- Sleep Difficulties
- Verbal Tics
Who can get PANS/PANDAS?
It affects roughly 1 in 200 children. 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 paediatrician. Many parents whose children who are diagnosed with autism at a young age are finding that their children’s behaviour 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 behaviour.
Is there testing available?
Yes, the following tests are often used to aid the PANS/PANDAS in diagnosis:4Strep Swab & Culture4ASO4Anti dNaseB 4Lyme and Co-infections 4Mycoplasma 4Influenza 4Epstein Barr 4Herpes 4Coxsackie 4Streptozyme. More advanced testing may include: Cunningham Panel and/or 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?
Children can get better especially with an early diagnosis. Many children respond well to 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). It takes a whole team to help children, these could include Speech-Language Therapy, Occupational Therapy, Sensory Integration and other holistic approaches. PANS is medical: symptoms are NOT behavioural.
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 paediatrician. 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.
Read more about PANDAS here:
PANDAS / PANS Advocacy & Support http://www.pas.care/
PANDAS Fact Sheet: http://pandasnetwork.org/wp-content/uploads/2016/04/2015-PNETWORK-fact.pdf
PANDAS Network (US): http://www.pandasnetwork.org/get-involved/2017-october-9th-awareness-day/