FAQs about PANS PANDAS
A clinical diagnosis is one made based on specific signs and symptoms observed by a medical provider rather than on lab tests or biomarkers. Both PANS and PANDAS are clinical diagnosis based on a set of specific criteria. They are also diagnoses of exclusion, meaning that a patient should be fully worked up for other known illnesses or diseases that could cause the observed symptoms. The workup should rule those other illnesses in or out.
Acute onset means that the symptoms start abruptly and without warning. In the classic PANS case, parents can name the date that their child woke up a different person. Given that PANS awareness is relatively low compared to other childhood disorders like ADHD or ASD, an acute onset can be missed.
No, your child might still have PANS. Given that many parents and providers don’t know what they are looking for (or looking at) when a child has a new onset, it is possible for an acute onset to be missed. Some children’s initial symptoms are mild, or they start when a child is very young, and the behavior is labeled as “typical” or “developmentally appropriate”.
Not necessarily. Many children with PANDAS don’t present with classic strep signs – sore throat, fever, headache, and stomachache. Strep infection can also infect other areas of the body, such as the anus. If children aren’t swabbed thoroughly or in the right places, an infection might be missed.
In addition to the infection not always showing up in the way parents and providers expect, rapid strep tests miss 15%-20% of active infections and blood titers (ASO and Anti-DNASE B) tests have a false negative rate of nearly 40%.
No, there is no single blood test for PANS or PANDAS. Common bloodwork used when working up a suspected case includes looking for possible infectious triggers, immune system function, and levels of key micronutrients. One blood test often used to help support a clinical diagnosis is the Cunningham Panel, which looks at levels of circulating antibodies directed against antigens concentrated in the brain and one enzyme that regulates neurotransmitters in the brain. The Cunningham Panel is used by some physicians to help in the diagnostic process.
A biomarker is something that can be measured and whose presence is indicative of a disease, infection, or environmental exposure. Biomarkers can be used to make a diagnosis, predict a prognosis, or measure response to treatment, among many other uses.
Currently, there is not a biomarker for PANS or PANDAS. Many autoimmune diagnosis are clinical diagnoses made based on a medical history and a workup to exclude other possible explanations for symptoms.
An encephalopathy is a disease that affects the functioning of the brain. PANS and PANDAS are encephalopathies.
Autoimmune Encephalitis (AE) refers to a group of conditions that occur when the body’s immune system mistakenly attacks healthy brain cells, leading to inflammation of the brain.
More research is needed to determine whether PANS is a form of AE, but some children who are diagnosed with PANS are eventually diagnosed with AE. Treatments for the two conditions have many similarities.
A relapsing-remitting disorder is when the symptoms are worse some of the time (relapse) and are improved or gone at other times (remitting). Being in remission is different from being cured. Once a patient has PANS, even during an extended time of remission, parents and medical providers will need to stay vigilant for a reoccurrence of symptoms.
Yes. Some PANS experts believe that children with ASD might be at greater risk of developing PANS. If a child has a sudden onset or sudden worsening of PANS symptoms, they should be given a full diagnostic workup before diagnosing the child with Autism or assuming these symptoms are only due to Autism.
PANS can become life threatening due to avoidant restrictive food intake disorder (ARFID)-related food restriction and due to suicidal behavior.
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Learn about other families whose lives have been affected by PANS/PANDAS — and be inspired to share your own.
In August of 2014 our daughter, Leah, was 6 years old. We had just returned home from a month-long trip to Illinois to visit family. When we arrived home in Arizona, she suddenly (overnight) developed a fear of vomit.
As I sit pondering where to begin, I realize just how difficult it is to actually write about my son’s struggle with the horrible disorder called Pediatric Autoimmune Neuropsychiatric Syndrome […]
A child's perspective on her journey with PANDAS
My name is Ella and I was diagnosed with PANDAS at age 13, now 15. Before PANDAS I was a four-sport athlete (basketball being my favorite), I loved hanging out with friends and family, I was doing good in school, and I was your normal teenager.