If you are reading this, then you probably know my boys. They are outgoing, rambunctious, fun loving kids. What you may not know is that they all have PANDAS, an autoimmune disease that was triggered by strep. Two years ago, our lives were turned upside down when my two youngest boys' personalities changed completely. They became aggressive, defiant, and regressed very quickly. Sam was a little subtler. He gradually lost executive function and he was unable to read or follow instructions. He began to have panic attacks and he was constantly scared something horrible was about to happen. It was terrifying. I was extremely lucky that to have a friend who is knowledgeable about PANDAS and she was able to help me get them treatment quickly. Three tonsillectomies, several antibiotics, seven rounds of IVIG, naturopathic treatment, and tons of supplements later we are on the road to healing. While my boys have made such great improvements, we still have a way to go for full recovery and we are always scared of relapse. We were very lucky to switch insurance companies this year and we were able to get IVIG, the gold standard of PANDAS treatment, approved for Embry and Carter. If we hadn't switched insurance companies this wouldn't have been possible, and we would have been in the same situation as hundreds of Georgia families trying to balance finances and decisions about our children's health. SEPPA is working to get legislation through for mandated insurance coverage for PANS/PANDAS. SEPPA celebrated a huge success this year when a bill was approved to form a study committee to study PANS/PANDAS, this will hopefully lead to getting insurance coverage for more children in Georgia. It happened in Illinois and it can happen here!
SEPPA is also working to educate providers all over the southeast about PANDAS and PANS so that children are quickly diagnosed and treated so that they can go back to being kids. I am on the board of SEPPA so I can tell you with absolute certainty that 100% of the money you contribute will be used to help kids like mine. Thank you for your support! We really appreciate knowing we have so many people standing behind us!