Dear Dr. Debbie,
My son is in second grade and has a friend whose mother informed me is afflicted with something called PANDAS. She said this explains his bursts of anger (which we have witnessed a couple of times) and was brought on by a strep infection. He’s getting treatment and the family is getting counseling. What is PANDAS and how common is it? What, if anything, should I tell my son about his friend?
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Dear Standing By,
PANDAS is a relatively newly named condition (PANDAS was named in 1998 by Dr. Susan Swedo at the National Institute for Mental Health) that can explain baffling behaviors in children, usually between ages 4 and 7.
A diagnosis is determined by a set of behavioral symptoms, which can include: mood swings, nervous tics, abnormal eating behaviors, extreme separation anxiety, sliding backwards with academic skills and obsessive-compulsive behaviors. These behaviors usually come on suddenly while or just after a child has a strep infection. The initials stand for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infection. There is also PANS, Pediatric Acute-onset Neuropsychiatric Syndrome, which is triggered by other common pathogens such as those that cause the common cold.
Antibiotics help to fight the germ while families learn to cope with the behavior issues. When the germs subside, so do the challenging behaviors. Since any of these infections can return, it is important for the child (and family) to learn to how to deal with the behavioral difficulties they can bring on.
One reason this disorder has only recently come to light is that the streptococcus germ can be active in your body without any symptoms. And while strep throat is quite common among school-age children, there are any number of common causes of behavioral difficulties — most of which are not PANDAS. Also hindering accurate diagnoses is that there hasn’t been universal acceptance in the medical field that this is indeed a brain malfunction brought on by a bacteria or virus. Similar to chronic fatigue syndrome or Lyme disease, there are skeptics who refuse to believe there could be a physical cause to what they see as psychologically evident — in other words, a whiny adult or a bad-tempered child.
Current estimates are that from 1 in 2,000 children to 1 in 200 children have PANDAS or PANS. Most often it is the bizarre behaviors typical of obsessive-compulsive disorder (OCD) that bring a family for help. Such obstructions to a normal daily routine may include repetitive hand-washing, opening and closing the same door or drawer, near constant touching of a chosen object, endless counting or other “broken record” speech. Fortunately the word is spreading among parents and doctors that a sudden onset of OCD may have an autoimmune explanation. The National Institute for Mental Health offers some answers to frequently asked questions about PANDAS.
One of the labs that conducts blood tests for PANDAS and PANS created an online video to help explain these conditions. Once you have a good understanding of what your son’s friend is experiencing, it will be easier for you to relate it to your son so he can understand, too. And your understanding may lead to your becoming a better friend of the mom.
Parents, friends and professionals interested in learning more about PANDAS and PANS can attend an upcoming conference at Brown University in Rhode Island, March 14-15, 2015. The first day is medically oriented, though non-professionals are welcome, and the second day is geared toward parents. For details or to register for the conference check the PANDAS Network website.
Thank you for giving me an opportunity to learn and share about this under-recognized condition.
Deborah Wood is a child development specialist in Annapolis. She holds a doctorate in Human Development from the University of Maryland at College Park and is founding director of the Chesapeake Children’s Museum. Long time fans and new readers can find many of her “Understanding Children” columns archived on the Chesapeake Family Magazine website. You can find her online at drdebbiewood.com.
What do you think? Leave your thoughts in the comments or submit a question to Dr. Debbie at Betsy@jecoannapolis.com