PN 2018 State of Our Children SURVEY(A precursor to the PN Patient Registry)

PN 2018 State of Our Children SURVEY

The PANDAS Network goal is to increase the awareness of how PANDAS-PANS impacts the life of the child AND family and to share this in the medical community. In the past 10 years (when PANDAS Network began) improvement in the recognition of STREP CAUSING PANDAS has been made.

This is a preliminary report of information as we continue to drive our mission to Build a HIPAA Certified PATIENT REGISTRY. A patient registry will allow researchers around the world to track our childrens' health. 

A more comprehensive comparison of diagnosis & treatment needs to be done ANNUALLY to track true progress. Following is a statistical estimate of your responses. We encourage you to print out the full report and draw your own conclusions. We hope it helps you understand patients and families around you a bit better.

Thank you for your help & advocacy!

Diana Pohlman,Executive Director, PANDAS Network

TWO MAJOR TAKEAWAYS - Progress

The Overall Report positive sign is that diagnosis was made 35% by pediatricians and 28% by neurologists.90% of the time a clinical diagnosis was made with 60% including positive strep titers.However, parents had to search for help. 15% report only one appointment was needed with 44% visiting 2-5 professionals before getting help.

And, importantly, because people are getting help -- 60% felt their symptoms had remitted to manageable levels. 

Here are short outtakes of the report that you can download on the website and review further:

BASIC PATIENT PROFILE

Reporting of 1,400 children (843 boys; 557 girls)   Average ages 9-13Acute onset avg. 5-9 and 30% saying milder symptoms noticed prior to age 5

Strep bacteria 65% was reported as precipitating illness with lyme and mycoplasma pneumonia reported approx. 15%

COURSE OF ILLNESS & TREATMENT

60% said that subtle symptoms occurred prior to onset77% were unable to go school at some point70% felt life routine was noticeably affected and/or severe

All symptoms as per PANS criteria were noted as present in the majority of children.

OCD and Irritability ranked most high 75%. ALL PANS symptoms were ranked similarly for many patients. Tics were present 50% of the time.

38% people did not see co-morbid health issues with their child; however, 32% of children had allergies.

Treatments used: Antibiotics 94%; Steroids 43%; IVIG 30%Treatment found to be most useful: Antibiotics 66% useful; Steroids 15% IVIG 22%

Be careful in using these statistics as healing depends on length of time ill, severity of illness and age.  This report does not analyze this and exceeds our statistical abilities at this time!

RELATIONSHIP & FINANCES

It was encouraging that 34% report feeling supported by their medical professionals.However, 50% of parents report “that their journey was met with doctors who meant well but were unable to help” and/or "left us feeling doubts and that we were “crazy".

Financial Impact was profound; 30% of respondents report spending $5,000 to $20,000. The rest of the families were either much higher or much lower than this grouping in monies spent.

58% report parental history of anxiety; 27% have OCD.

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