In PANDAS children, a strep infection occurs before or at the time the OCD symptoms ramp up. Assuming the infection is adequately treated, the first symptoms generally improve within 4-6 weeks.
Although it may take time, most children who have PANDAS recover completely with treatment. Symptoms tend to slowly get better over several months once the strep infection clears, but there may be ups and downs. PANDAS is likely to come back if your child gets strep again.
However, what you may not know is that there's an infection that can mimic some of ASD's symptoms and go undiagnosed for years in patients with autism. I'm talking about PANDAS, or Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.
Children with PANDAS seem to have dramatic ups and downs in the severity of their OCD and tics. OCD or tics that are almost always present at a relatively consistent level do not represent an episodic course. Many children with OCD or tics have good days and bad days, or even good weeks and bad weeks.
A flare up does not last forever, and symptoms do eventually subside for most patients. In fact, some studies suggest that about 95% of kids will outgrow PANS or PANDAS by adolescence or young adulthood when their immune systems fully mature.
PANS/PANDAS patients are commonly misdiagnosed with Autism, Tourette's Syndrome, OCD, bipolar disorder, ADHD, Oppositional Defiance, or an eating disorder. However, PANS/PANDAS patients can have co-occurring conditions of Autism, ADHD, autoimmune illnesses, immunodeficiencies, and more.
The cause of PANS is unknown in most cases but is thought to be triggered by infections, metabolic disturbances, and other inflammatory reactions.
Untreated PANDAS/PANS can cause permanent debilitation, and in some cases, can become encephalitic. Repeat strep infections can cause serious problems, so it is vital to eradicate strep. Subsequent episodes can be caused by environmental and infectious triggers different from the original infection.
One way that probiotics may be helpful for PANDAS is in preventing digestive problems due to antibiotics, a common treatment for PANDAS. Research has found that probiotics show promise for this purpose. Another way is through the gut-brain axis, or how digestive health and brain health can impact each other.
The response to antibiotics can occur quickly – full or partial remission of OCD, anxiety, and many of the comorbid symptoms of PANS and PANDAS within 24-48 hours. Typically, however, the response occurs after a week or two of therapy.
So far as we can tell, PANDAS does not occur more often in children with autism than among other children. However, PANDAS may be more difficult to recognize in a child with autism – due to overlapping symptoms. Or it may be mistaken for classic OCD, which commonly co-occurs with autism.
Some scientists say an immune condition called PANDAS affects as many as 1 in 200 children who have traits similar to those of autism. But many experts contest that figure — and even the condition's very existence.
PANDAS/PANS causes inflammation in an area of the brain called the basal ganglia, which helps govern emotions and motor control. When the immune system creates antibodies to the strep infection, these antibodies mistakenly attack tissue in the basal ganglia as well.
PANDAS stands for “pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections.” Some providers think it represents a group of psychological and neurological problems that may develop in children who've had strep infections.
In the case of PANDAS, strep bacteria cause the immune system to attack healthy cells in the brain (specifically the basal ganglia). These result in neurological abnormalities, mental and academic regression and severe psychological problems. Symptoms generally appear soon after a bout of strep throat.
Currently, there is no single blood test that detects PANDAS or PANS. However, lab tests can guide healthcare professionals in the right direction for diagnosing and treating your child's condition.
The good news is, many kids with PANDAS or PANS go into remission during treatment, and are able to stay symptom-free for long periods – possibly even permanently if exposures to strep or their trigger microbe are avoided.
Oral nonsteroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen or naproxen may be beneficial for PANS/PANDAS patients. The medications appear to be particularly useful for exacerbations (or “mini-flares”) which occur in the weeks following immunotherapy.
Doctors consider PANDAS to be a childhood disorder that appears between the ages of 3 and 12 years. While it is possible that an adult or teenager might develop PANDAS, research has not explored this issue in depth.
Severe/Extreme: Symptoms are incapacitating, life threatening, or occupy 71%–100% of waking hours. The PANDAS Physicians Network (PPN) flowcharts for diagnosis and treatment will help clinicians evaluate their patients and determine the best course of treatment.
What is the prognosis for a child with PANS/PANDAS? For children who are diagnosed early and a cause has been identified, the prognosis can be very good. Some patients respond quickly and are back to 100 percent normal function, but that doesn't happen for everybody.
The short answer is yes. While the focus in research has been on children with PANS, the link between the immune system and neuropsychiatric symptoms can be seen in patients of many ages. In our clinic, we see teenagers and adults who have symptoms and medical history consistent with PANS.
Intravenous immunoglobulin (IVIG) is likely to be the preferred therapy for moderate cases. Prophylactic antibiotics are often useful in the management of PANS/PANDAS, as they help to prevent strep-triggered exacerbations. Cognitive behavior therapy should be started as soon as the child can tolerate it.