There is currently no long-term prospective study on the outcome of this newly identified (1998) illness. However, parents, advocates, providers, and researchers can say that PANDAS and PANS children can heal, recover, and not be defined by this syndrome!
TREATMENT AND RELAPSE SURVEY RESULTS
The following is data compiled based on parent emails. Please do not rely on this as scientific evidence of the benefits of any treatment. It is a picture of each child’s journey only. Original 200 PANDAS Case Summaries (pdf)
In 2012, the PANDAS Network Executive Director, Diana Pohlman, “revisited” these families to find out how they were years later. Below are the collective results. We found the vast majority greatly improved and had very minor, if any, remaining symptoms after one year of treatment.
ONE YEAR POST TREATMENT Average Age 4-10 yrs, Boys 2:1 Girls
One or two IVIG’s:
IVIG with Antibiotics = 88 children total
Improved = 69
Relapsed = 19
12 relapses when “longterm” 2+ years untreated*
Antibiotics Only = 78 children total
Improved = 63
Relapsed = 15
2 relapses when “longterm” 2+ years untreated
8 children did PEX exchange (2 with great success and other with moderate success*)
2 remitted with no treatment
24 did not respond to inquiries
*The majority of these children had complex cases: co-morbid autoimmune disease, PANDAS illness untreated beyond 4+ years, autism, or repeated streptococcus infections within first year of treatment.
Were there relapses after one year? 25% said yes, mildly: Between 2011-12, I followed up with approximately 80 of the above parents. I was not able to be as thorough with statistics as I returned to work when my own son healed. But for what it is worth – those that improved maintained a majority of improvement but approximately 25% reported “minor upticks” of symptoms (mild ocd, anxiety or tics). Only 2% of families reported major relapses and the reasons for the relapse are, sadly, unclear to me. Sometimes it may just be severity of the attack. This is why opinions from neurologists like Dr. Finn Somnier that acknowledge potential encephalopathy are important…..I think at times this can happen with PANDAS.
Parents said minor upticks tended to require an increase in antibiotics (increase from prophylactic to treatment dose) for 5 to 6 weeks, assistance with ibuprofen or prednisone for a few weeks and sometimes and H1 or H2 blocker as well. Each exacerbation lasted about one to two months but NEVER approached the initial onset level of PANDAS. Parents said these mild upticks occurred sometimes (but not always) when the immune process was stressed: cold, flu, fever or cough; strep infection, loose teeth, once with severe food poisoning, and in a few instances, tonsils that were infected were removed. Two parents whose children had a substantial increase in OCD and fears, though not as severe as the initial onset, did IVIG one additional time and the children improved to the point that all OCD/fears were gone. Tics diminished but were not entirely absent.
Finally, these reports of improvement match what I hear the majority of the time from the majority of treating experts. There is no evidence that repeated monthly high dose IVIG’s are warranted in the majority of cases . However, complicated cases with immune deficiency, autoimmune disease, or autism often report that “one or two IVIG’s are not enough.”
No matter what, it takes 3 to 6 months to see a diminishment of symptoms post-IVIG or antibiotic treatment. I was able to watch evidence of the auto-antibodies and CamKinase II diminishment over 3 to 6 months together with behavioral improvement with Dr. Cunningham’s test.