A public service announcement by PandasNetwork.org
This is on Facebook, but here is a link to a must-see video made by parents for parents of children with PANDAS / PANS.
Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections – PANDAS
Pediatric Infection-Triggered Auto-Immune Neuropsychiatric Disorder – PITAND
PANDAS and PITAND are relatively new explanations for a very old disease – the spread of strep or rheumatic fever to the brain.
The terms are about 15 years old and established by Dr. Susan Swedo of the National Institutes of Mental Health (NIH / NIMH) in the mid-1990s.
PANDAS describes a group of children who seemingly overnight develop symptoms of OCD (obsessive compulsive disorder), involuntary movements (tics), mood disturbances and other serious health problems following an infection with GABHS or strep bacteria, as in a simple strep throat, or scarlet fever. PITANDS may be due to a different infection entirely that still ends up crossing the blood-brain barrier and producing similar symptoms.
Other symptoms may include the sudden appearance of eating disorders, behavioral regression, anxiety, sleep problems, hyperactivity, learning disorders, behavioral problems or bedwetting.
These children have an immune system that is unable to get rid of the strep, even with antibiotics. They may be genetically prone or have some kind of problem with their immune function. Through a complex mechanism, their body ends up producing antibodies that cross the blood brain barrier and attack the child’s own brain, producing an autoimmune reaction in the basal ganglia thought to be responsible for the child’s symptoms (more information available in the links section below).
As a newly recognized illness, there is much controversy within the medical community around whether or not PANDAS exists, how to diagnose it and how to treat it. It requires a new way of thinking about these childhood disorders and not all providers have been open to doing this yet. NIH held the first ever conference on PANDAS just this past summer, and a mere 20 physicians and researchers from around the country and around the world attended. Thus, most physicians and pediatricians have not yet heard of PANDAS, and insurance companies are lax in covering treatments.
At the same time there is a growing evidence-based library of peer-reviewed medical literature and success stories of children diagnosed with PANDAS and treated appropriately. PANDAS was in the news over a dozen times in 2010. There are a number of networks and blogs and information banks that share information about PANDAS (see links below,) and a movement to educated physicians to “Think PANDAS” when a child presents with sudden onset of neuropsychiatric or tic disorders.
Many parents of children with PANDAS tell a similar story. Their child was fine until a specific date and then everything changed. Usually, at least in retrospect, they can identify a strep infection within months prior to symptom onset. Often they end up going through a series of doctors and health providers before finding someone who Thinks PANDAS and actually diagnoses their child. Many others figure it out themselves by spending endless hours researching online and finally finding someone to do the testing.
There are a number of tests that can be run to assess your child, to determine whether your child has been exposed to strep and if they are producing auto-antibodies. In our practice we also do tests that evaluate the health of the entire immune system and test for any co-infections that might be present and weakening your child’s immune capacity. We believe it is important to treat not only the PANDAS but any underlying imbalance as well, to promote the full health and recovery of your child.
Treating PANDAS is complex and unique to each child’s presentation, health and length of PANDAS symptoms. With active strep most children require antibiotics, and we do whatever we can to minimize their impact on the GI tract. Many PANDAS children already have digestive problems such as celiac disease or dysbiosis (imbalance of bacteria in the gut) resulting in nutritional deficiencies or other inflammatory disorders which we try to correct in the process as well. Your child’s unique situation may also benefit by involving other providers, such as a pediatric neurologist or neuropsychiatrist, rheumatologist, or immunologist, and we would be happy to help you find the right referral in these situations.
The standard of care for treating PANDAS may include additional medications or even herbs, as well as IVIG, or intravenous immunoglobulin therapy, which we are happy to be able to provide within our practice. We have our own infusion suite which is very comfortable and private and do everything we can to ensure your child’s safety and comfort throughout the process.
Our PANDAS treatment program came about in 2010 as the result of one of the providers in our office having a child with PANDAS. Thus we have the privilege of being both parent and provider for PANDAS children, and understand the toll this illness can take on families. We are 100% committed to serve your child and family in the most respectful, efficient and comprehensive manner. We really listen and believe that you know more about your child than we do. We say YES to investigating your child’s health problems in full and to exploring any treatment possibility that could help them.
In addition, we go out of our way to make the IVIG treatments affordable for your family, often charging thousands of dollars less than some other offices. We do this for you because this is the kind of care we would want for ourselves.
Amy Smith, NP – PANDAS / PITAND Program Coordinator
PANDAS Network http://pandasnetwork.org/
(*MOST INFORMATIVE gathering of PANDAS related information and studies)
NIH Info on PANDAS http://intramural.nimh.nih.gov/pdn/web.htm
Brief History of PANDAS http://www.latitudes.org/forums/index.php?showtopic=5144&st=0&p=36300&#entry36300
Excellent Summary of Diagnostic Criteria for PANDAS http://webpediatrics.com/pandas.html
PANDAS in the news 2010 http://pandasnetwork.org/2010/12/video-pandas-2010-the-year-of-hope/
Child Advocate Penn State http://www.childadvocate.net/PANDAS_treatment.htm
Stories of children with PANDAS on the Web