If a child receives antibiotics early after the onset of symptoms, an exacerbation typically lasts 5 to 6 weeks and then it gradually dies out. Most children will not experience a cessation of symptoms as quickly as onset occurred. In fact, there may be an uptick in symptoms along the way when recovering, but a full unremitting backslide should not occur. If it does, it could be the infection was not fully eradicated, a new infection is present, or further medical interventions are needed. It is important to keep the immune system calm while the child is recovering.
Low level anxiety and OCD/TIC issues may remain permanently or fade away after several weeks or months. There are times where the exacerbation can take 4 to 6 months to remit.
However, in many of the acute cases, the typical course of antibiotics is not helpful and the child continues to suffer for months, and symptoms often increase in severity. The acute cases are having an encephalitic reaction to strep and aggressive treatment needs to be considered.
Long Term Prognosis
Parents often ask if their child will outgrow PANDAS and PANS. Often it is difficult to receive a diagnosis for this relatively newly understood illness. Major universities like Columbia, Yale, and Stanford are identifying biological factors in this autoimmune process.
There is currently no long-term prospective study on the outcome of this newly identified (1998) illness. According to Swedo in her landmark paper, “The age of the host also may determine susceptibility (to PANDAS); it is known that rheumatic fever is quite rare after puberty. It appears that the developmental changes of adolescence may decrease the vulnerability to the cross-reactive autoimmunity. It is also possible that the postpubertal decrease in incidence (44) is related to the fact that the rate of GABHS infections falls dramatically around the age of 12, presumably because the child has developed antibodies against the conserved portion of the M-protein (i.e., the child is able to make antibodies that recognize all strains of GABHS) (V. Fischetti, personal communication, 1994).”
Two new studies in 2020: one from Yale studying 27 children identified autoantibodies that attack interneurons in the basal ganglia region (read abstract here). In a subset of these children, IVIG removed these harmful autoantibodies. Columbia University erased the debate, using animal models, about whether strep bacteria can affect the immune system in such a way that it drives this disease into children's brains. Read the paper here, and watch a video on how immune response to strep infection triggers basal ganglia encephalitis through the breakdown of the blood-brain barrier here.
Theories regarding the autoimmune aspect of PANDAS state that:
- Overtime the body develops a natural immunity by the immunological maturing process.
- The thymus, which produces antibodies in children, largely shuts down at adulthood.
The hope is that the child’s immune system will eventually learn to develop the correct antibody response to strep as they get older.
With PANDAS, it is important to keep strep at bay and not to incite the autoimmune response over and over. Hence, why many children stay on a prophylactic dose of antibiotics well into adulthood to try to prevent strep infections.
Even if a subsequent exacerbation is caught quickly, it does not mean it will be an easier recovery or any less severe. In some cases, exacerbations worsen each time they occur. No matter what your choice of treatment, protecting the child from more strep infections or proximity to ANYONE sick with strep in the first year of healing needs to remain high priority.
PANDAS may stop for some girls at onset of menses. It is currently believed through follow up conversations with parents that approximately 20% of all pediatric cases have recurring issues into young adulthood. It is not clear yet if that 20% did not get adequate preventative care in the earlier years. This is an area of research that needs to be expanded. The NIMH attempted to complete a prospective 8-year study of PANDAS children in 2010, following children with PANDAS-onset OCD and Non-PANDAS OCD, but it was incomplete due to a lack of funding. According to Swedo in a February 2011 interview, some children had persistent symptoms, but they were able to be managed through medications or they were so minute, they did not impede the person’s life and no medication was even needed. It is not clear what type if any treatment these children have received.
Whether PANDAS can eventually become a chronic condition that will continue into adulthood, no one really has an answer for that. Dr. Tanya Murphy states in Clinical Factors Associated with PANDAS , “Whether children with a PANDAS subtype typically will go on to remission or progress to a more chronic course of illness is not known.” For this reason, parents MUST remain vigilant in protecting their children from contracting strep. Also, do not assume one can forgo treatment as a child in hopes that puberty holds the key.