Imagine this. Your six year old daughter has a bit of a cold. She complains of being achy and is a spot feverish, you take her to your doctor, they test her for strep, the culture is negative, so you go home planning for fluids and plenty of rest.
The next day your daughter wakes up grimacing, blinking her eyes, and constantly clearing her throat. These facial and vocal movements continue to increase and you begin to worry. You take your daughter to the children’s hospital, where the psychiatrist does a complete medical history and tells you your child has a tic disorder, never mentioning that such rapid onset could be associated with an untreated infection. This scenario has played out thousands of times. Here’s what you need to know if your child has sudden-onset (24-72 hours) motor tics, vocal tics, OCD or anxiety with no apparent precipitant.
1. Infection can trigger Autoimmune Neuropsychiatric Disorders. At the current time PANS is estimated at a rate of 1 in 200 children. In my own practice parents have reported an onset of psychiatric symptoms in children after a bacterial or viral infection approximately 1-5 in 100 times. It is also possible that genetics loads the gun and the environment or infection pulls the trigger. In Arizona, our local neurologist who is familiar with PANS is Dr. Melanie Alarcio, (623) 535-0050. For providers by State CLICK HERE.
2. It is important to ask your physician to test for undiagnosed medical illnesses before referring you to psychiatry. Some of these tests are expensive and specialized, so they are not done as a standard protocol when children present with rapid-onset neuropsychiatric symptoms. Lyme disease, streptococcal bacteria, mycoplasma infections, influenza, and varicella have all been observed to cause rapid onset neuropsychiatric symptoms in some children. Proper diagnosis and treatment with antibiotics as soon as the symptoms present is important. Raising awareness is also central.
Here is a valuable podcast with Dr. Susan Swedo, principal investigator NIMH.
Here is a valuable video with Kari Kling and Immunologist Dr. Michael Daines.
3. Strep throat infections can only be diagnosed by obtaining a throat culture that yields Group A beta-hemolytic streptococcal bacteria. In order to have a reliable throat culture, the swab must reach the oropharynx (the top back part of the throat) which typically is slightly uncomfortable and makes the child gag. A throat culture swab that only touches the back of the tongue will give a falsely negative result, as will one that is just touched to the sides of the throat. Poorly done throat cultures are a common cause of false negative results. Rapid strep tests can also give falsely negative results, as they miss about 10-15% of cases of strep throat. If the rapid strep test is negative, an overnight culture should be done to make sure that there aren’t strep bacteria present.
4. Physicians and health care providers need to rule out biological causes of psychiatric symptoms before intervening behaviorally. Consensus Guidelines.
Dr. Lynne Kenney is a pediatric psychologist in Scottsdale Arizona, the mother of a child with PANS and the co-author with Wendy Young of Bloom: 50 Things to Say, Think, and Do with Anxious, Angry, and Over-the-Top Kids.