Special Needs
PANDAS Disorder Isn’t Cute or Cuddly By Cheryl Maguire
When you read the word PANDAS, you probably envisioned a cute, cuddly animal native to China. Unfortunately, there is nothing cute or cuddly about the acronym PANDAS which stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The disorder was first identified in an article by Dr. Susan E. Swedo and her team at NIMH in 1998. According to NIH a child with PANDAS experiences emotional symptoms such as irritability, separation anxiety, ADHD symptoms, sleep disturbances, bed wetting, fine motor changes, joint pain, concentration difficulties, loss of academic abilities, and developmental regression. In relation to the emotional symptoms Swedo has been quoted as saying, “Some families have told us that their children seem possessed.” PANDAS is considered an autoimmune or autoinflammatory disease in response to the strep infection. Streptococcus, the bacteria that causes strep throat, is also linked to other autoimmune diseases such as rheumatic fever and scarlet fever. In the case of PANDAS the person’s immune system attacks brain cells, causing OCD, tics and other emotional symptoms. It is unknown why only some children develop this disorder. It is a rare condition with only 2,000 children diagnosed although it’s possible some children have it and are not properly identified. The treatment for PANDAS depends on the severity of the disease. In mild cases, antibiotics are prescribed to treat the strep infection. In most cases, this will get rid of the OCD or other symptoms. In more serve cases children are given a combination of antibiotics along with immunomodulatory therapy like an intravenous immunoglobulin (IVIG) or an oral steroid. There has been debate among doctors and researchers whether PANDAS is even a real disorder. Alison Motluk wrote an article “A Feverish Debate” which details the controversy surrounding the diagnosis of PANDAS. Motluck wrote, “Skeptics argued that these findings could be 18
Our Kids Magazine | Janaury / February 2021
coincidental: the children just happened to have strep when the behavioral symptoms appeared.” She also notes that a research study was conducted in 2002 found, “there was no evidence that strep uniquely intensified the symptoms in PANDAS kids.” James Leckman, a psychiatrist at Yale University questioned the validity of this study in regards to the subjects and control group. I interviewed Ella (names changed for privacy), a 12-yearold girl who was diagnosed with PANDAS at age 8. Her mother, Christine, also answered questions regarding their experience.
Before you were diagnosed, did you know about PANDAS? Christine and Ella: No How old were you when you first experienced symptoms? Ella: I don’t really remember, I think I was in Kindergarten. Christine: She was around 5 years old when she first started getting strep throat. She would get strep throat and then go on antibiotics. Then the strep throat would come back again once she was done with the antibiotics. Sometimes we didn’t even know she had strep since she didn’t have a sore throat. Her only symptoms were a headache and stomach.
What were your PANDAS symptoms? Ella: I don’t remember much about it. Christine: Ella had a lot of OCD symptoms. She had to wash her hands all the time. She washed her hands so much they would bleed. Ella: And I used hand sanitizer a lot Christine: At bedtime everything had to be in order. The closet door had to be the same as when she left it before. The comforter on the bed had to be the same position. All her toys LIKE US @ facebook.com/OurKidsMagazineSA
