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LONG TERM PROGNOSIS

 

PANDAS/PANS POST-PUBERTY

Parents often ask if their child will “outgrow” PANDAS and PANS. One has to look at that question from two points of view.

  1. Does a child “outgrow” getting strep infections (the trigger for PANDAS) as they hit adulthood?
  2. Does the child “outgrow” the actual autoimmune disorder?

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).”

As for the autoimmune aspect of PANDAS, theories are that:

  1. Overtime the body develops a natural immunity through a natural immunological maturing process.
  2. The thymus (producer of 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.

When discussing PANDAS, one has to remember that strep is the trigger. 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. We are hearing from anecdotal reports that often exacerbations worsen each time they occur.  There is no way in knowing how a child will react. The immune system is on high alert. 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. We, as parents and doctors, owe it to these children to give them the best chance of recovery and no future suffering.

PANDAS may stop for some girls at onset of menses.  It is currently believed through follow up conversations with parents that only 2-3% of all pediatric cases have recurring issues into young adulthood. It is not clear yet if that 2-3% did not get adequate preventative care in the earlier years. Doctors will try to clarify that issue in the near future. The NIMH is completing a prospective 8-year study of PANDAS children in 2010 following children with PANDAS-onset OCD and Non-PANDAS OCD. According to Swedo in a February 2011 interview, she stated that half of the children in that 8 year study, no longer had symptoms. Some still had some type of symptoms present 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. Even practicing doctor and researcher, Dr. Tanya Murphy states inClinical Factors Associated with PANDAS  (pdf provided by the NIH). “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.


WHAT IS THE LONG-TERM OUTCOME OF THIS SYNDROME?

It is still not entirely known.

Doctors watching PANDAS patients over the last decade feel that if the child continues to suffer from some dysfunction (mood lability or anxiety or mild tics) the long-term outcome seems to depend on: severity of initial episode, number of recurrences, family history and many other factors.

In severe cases, it takes time to heal and outcomes of each child are uncertain. But most parents agree, that by puberty, if children have been treated by one of the PANDAS treatments (antibiotics at each exacerbation or IVIG or PEX if the child does not improve on antibiotics) —they have a healthy outcome and function without problems. The proper function of the basal ganglia is difficult to monitor. So doctors aren’t able yet to determine if any persistent symptoms are related to dysfunction (temporary) or damage (longer term).

Therefore, in acute PANDAS cases, where cessation of acute symptoms just does not occur, parents opt for IVIG or Plasma exchange in order to hopes of preventing permanent damage.

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