It’s frightening, really. One day, you wake up and your child seems like a different child. He’s scared to be left alone, refuses to eat foods he used to love, talks about death and other strange things, and blinks sixty times a minute.
Off you go to the pediatrician who is uncertain why your previously sweet, cooperative child is now screaming and terrified over minor things and unable to dress himself or make simple decisions on his own. The doctor cannot seem to understand how this happened overnight. If you’re lucky, your pediatrician may do a strep test. If the test is positive, she will prescribe antibiotics. You will be so grateful when you see your child begin to return to his normal self.
Your relief may be short-lived, however, when you realize he suddenly can’t focus at school and the tics don’t seem to disappear completely. Then comes the next illness, and in the blink of an eye, you are right back where you started a few weeks or months ago. This time, the antibiotics take longer to work, and even though there is some improvement, your child is left with more issues than before. You begin visiting different doctors in different specialties, but no one seems to have answers for you, and your child’s case is referred on to yet another doctor. Meanwhile, your child is getting worse. He may not even be able to go to school, and now the school is contacting you about missed days and issues with behavior. The rest of your family is feeling stressed as the illness takes its toll. You’re spending a lot of time managing the multitude of issues generated by your one sick child.
Your child may have PANDAS/PANS, and it definitely is not an easy-to-diagnose or easy-to-treat illness.
What is PANDAS/PANS?
PANDAS is short for pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections; PANS stands for pediatric acute-onset neuropsychiatric syndrome. These are disorders that affect children who have not gone through puberty. Typically, onset is abrupt; most parents can remember the exact day the symptoms started. The main symptoms of the disorders are the sudden onset of anxiety (usually separation anxiety which may manifest as school phobia) and OCD (often centered around food/eating or hoarding of items), coupled with at least two of the following: tics, trouble focusing, mood changes, oppositional behaviors, sensory issues, regression in fine motor skills, and deterioration in school performance (if the child is still able to go to school).
What causes it?
Without getting technical, it occurs when antibodies produced by a bacterial or viral illness cross into the brain and bind at inappropriate spots.
How is it treated?
Just like the illness itself, this is not black and white. The treatment is very individualized, involving a combination of medications, including antibiotics, steroids, probiotics, NSAIDs, and in some cases, prescription anxiety/OCD medication. Most cases of PANDAS/PANS can be managed by a knowledgeable pediatrician. In more severe cases, your child may need to see an immunologist for plasmapheresis (removal, treatment, and return or exchange of blood plasma or components) or treatment with IVIG (a mixture of antibodies).
The good news is that with proper treatment, it is likely that your child will be back to his normal self. However, unlike the abrupt onset of illness, it may take years of treatment for residual symptoms of ADHD, tics, and anxiety/OCD before your child is able to taper off all medications. Move quickly if you observe symptoms. Delay in diagnosis and treatment may cause prolonged symptoms and increase the likelihood of permanent manifestation of symptoms.
Julie Fortner, MD, has been a pediatrician in the Richmond area for more than twenty-five years. She has four human children and eleven furry children – one of the human children was diagnosed with PANDAS at age nine. He is fully recovered and enjoying his freshman year in college.