Rachel is a bubbly and adorable 8-year-old girl. From a young age, she was afraid of the dark, but after a minimal amount of coaxing, would eventually go to bed. Outside of the home, Rachel loved school, excelled in her classes, and looked forward to going to school each day. Suddenly, one night, all of this changed. Rachel would not go to bed. She claimed she was afraid of the dark. After four hours of her mother sitting beside her bed, Rachel finally fell asleep; however, she awoke an hour later screaming, “Please don’t leave me alone. I can’t be alone.” Rachel’s mother, in an effort to calm her down, spent the night on the floor beside the bed. Even so, Rachel woke about every half-hour to check that her mother was still there.
The next morning, Rachel refused to go to school and screamed, “I am afraid and I can’t leave you, Mommy.” Her mother was confused by this behavior but reluctantly brought her to school even as Rachel kicked and screamed. At school, she continued to cry all day and even fell asleep a few times. At bedtime that night, the same scenario replayed itself. At this point, Rachel’s mother knew that there was something wrong with her daughter, but she could not figure out what the problem was. Rachel seemed fine: she had no fever, no rashes, no pain that she complained of in her ears or throat.
When this strange, fearful behavior went on for a few weeks, her parents took Rachel to the pediatrician for advice. Their pediatrician examined Rachel and could not find physical symptoms, so she sent them to a psychiatrist. While the psychiatrist gave Rachel medication that somewhat eased the behavior, her mother noticed that her daughter was still not the same Rachel. Bedtime and leaving to school were still rather difficult. Her mother spent many hours on the Internet trying to figure out what was wrong with her once happy and lovable daughter. She discovered information about a syndrome called PANDAS that she believed was the cause of Rachel’s anxiety and fear.
In 1998, Dr.Susan Swedo, from the Pediatric Developmental and Neuropsychiatry branch of the National Institute of Mental Health, found a connection between strep throat and anxiety, obsessive-compulsive behavior and tics. This syndrome is called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections). PANDAS often occurs when a child who has not yet reached puberty has strep throat that goes untreated or unnoticed. In every bacterial infection, the body produces antibodies to fight against the invading bacteria, and eliminate them from the body. In the case of PANDAS, the strep reacts with a part of the brain called the basal ganglia, which causes the child to act as if s/he is suffering from a mental illness. For example, a child, like Rachel, who is slightly anxious wakes up one day and is extremely anxious and has a hard time functioning. Or in other instances, a child may suddenly begin to chew on his or her collar or twirl her hair obsessively. Similar to Rachel’s mother, parents are usually able to pinpoint a certain day when their child began to exhibit these extreme symptoms.
If you feel your child’s behavior has suddenly changed and suspect that he or she has PANDAS, it is important to see a pediatrician and have a throat culture and a blood test done. Take into account, there are times that the culture may come back negative but the antibody levels in the blood may be very high. If the levels are high, the child needs to be put on antibiotics. Studies have shown that PANDAS responds to an antibiotic called Zithromax. There are various ways in which this antibiotic is used to treat the PANDAS. This needs to be discussed and administered by your pediatrician.
Once it is confirmed that it is PANDAS and the child is on antibiotics, the child should be taken for some cognitive behavioral therapy (CBT) to help eliminate the negative symptoms that have become ingrained in his or her everyday routines. CBT means that with the help of a therapist the child can teach her brain to think and act in a different way than it operated in the past. CBT is based on the idea that our thoughts cause feelings and behaviors. The benefit is that if the child can change her thoughts, she can change her behavior. While the antibiotics help to erase the exaggeration of symptoms, CBT helps to eliminate all fears, tics, behaviors and anxieties.
When Rachel’s mother read about PANDAS, she believed that her daughter was suffering from the syndrome. She was a bit confused, though, as Rachel had no strep symptoms. Regardless, she took her to the pediatrician who took a strep culture. While it came back negative her antibody levels were very high. The doctor put Rachel was put on a course of Zithromax, and with the consent of the psychiatrist weaned her off the psychiatric medication, and she then came to see me for CBT. We worked together on ways to help her conquer her anxieties and together with the antibiotics in a matter of weeks, Rachel once again became the sweet lovable girl who loved school and could sleep in her own room by herself.
Another client I worked with was an 11-year-old boy named Josh. Josh had been very social and was a straight-A student. Like Rachel, he, too, suddenly developed some rather strange behaviors. He would constantly smell his hands and explained to his father, “I think they smell. I keep checking to see if they smell.” He also acquired a tic in which he was constantly rubbing his eye and shrugging his shoulders. With this tic, Josh would also constantly bite on his shirtsleeve. Aside from his strange tics, Josh’s grades in school began to drop and his friends stayed away from him.
Josh’s parents were confused by this abrupt change in their once friendly and clever son. Eventually, they took him to the pediatrician who thought that they should test for PANDAS. While Josh had no strep symptoms, his culture came back positive and his antibody levels were very high. The pediatrician put him on a regimen of Zithromax and sent him to me for some CBT. After several months, with the help of CBT Josh was able to control the thoughts and actions that seemed to overtake him. Miraculously his tics and shirt biting all disappeared. Josh started to do well in school again and his friends began spending time with him again. His mother once told me that she feels that with the identification of PANDAS and work with CBT “a cloud has lifted from her son.”
Only recently has PANDAS become more acknowledged by pediatricians. Even today, it is still not completely understood or accepted by the medical community. Regardless, PANDAS and its devastating effects is afflicting many of the children in our community. Strep is spread easily in our highly populated schools and large families making us more susceptible to PANDAS. Those who have been treated have been able to see tremendous improvement from antibiotics and CBT. It is important for all parents to educate themselves on this topic and if they suspect their child might have PANDAS, they need to have them tested and arrange for therapy. As Rachel and Josh’s parents can attest, PANDAS is a frightening thing to watch happen to a child, however, we can all take comfort in the support available and the real possibility for recovery.
*Names and some details have been changed to protect the client’s identity.
Michal Geffner is a LMSW psychotherapist practicing in the Flatbush area sharing office space with Vicky Harari. She specializes in anxiety disorders in children and adults and has a broad spectrum of training and experience in all fields. Michal Geffner may be contacted at (718) 692-2289 ext. 2; or by e-mail at firstname.lastname@example.org.