Families for PANS/PANDAS Awareness

As many of you know, two of our children, Neely and Lucy, have been diagnosed with an autoimmune disorder called PANS/PANDAS (Pediatric Acute-onset Neuropsychiatric Syndrome or Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus). PANS/PANDAS is a complicated disease that causes sudden onset of OCD, tics, rage, anxiety and much more. For those of us trying to fight this disease, we are faced with challenge after challenge. One of the biggest challenges is finding a doctor who is knowledgeable about PANS/PANDAS. Because it is challenging to find a knowledgeable doctor, it is even more challenging to find doctor’s in Georgia willing to offer treatment. Insurance presents another huge obstacle as it is very difficult to get insurance to pay for treatment for this disease. Currently, we have three terrific local doctors who are helping us “manage” the disease. However, in the last year we have gone after a more long term solution. We have taken Neely to Chicago twice in the last
year to have high does IVIG (Intravenous immunoglobulin) treatment with one with of the top PANDAS doctors in the United States. However, the treatment is incredibly expensive. The cost is based on weight - $1,000 for every ten lbs. The treatment alone will cost around $13,000 out-of-pocket, not to mention costs for flights, hotel and other travel related costs. Along with all that comes monthly medications, doctors visits, blood work, and testing. With that being said, Scott and I, along with some of our wonderful friends and family are planning our 2nd annual PANS/PANDAS Family Fun Day not only, to raise funds for treatment, but also to raise awareness about this difficult disease.