Learning that your child has PANDAS or worrying that signs and symptoms point that direction can be terrifying, alienating and overwhelming. Often parents think the situation is temporary and will resolve itself like a typical illness. Certainly the duration of this peculiar illness you are facing will be similar to the flu or a cold or at the most pneumonia. What happens when this situation drags on longer than you expected? When the symptoms increase and get worse than you ever could have pictured? When what you are going through is so extreme that you truly cannot explain it appropriately to anyone else?
Our family has knowingly lived with PANDAS for almost 7 years. With the knowledge we now have we realize we have probably been living with it since the birth of our first daughter almost 10 years ago. We have investigated any treatment that has ever been introduced to us and have implemented a plethora of them. We are intimately familiar with conventional medicine, alternative medicine, energy healing and more and see merit in all of them.
My personality is not one that easily asks for help. Our child that has PANDAS is our oldest and before we knew what was going on we really thought we were failing at the whole parenting thing. Even if asking for help was something that was easy for me, how do you really explain what kind of help you need?
Now that our family is 10 years into the PANDAS life, we have accumulated some serious knowledge on a lot of fronts. We want to be able to help other families who are finding themselves overwhelmed and don’t know where to turn because the typical family doesn’t really understand what you are going through.
I am planning on writing a series of ebooks on Strep, Lyme, situations we have been in, therapies we have used, testing we have done, legal issues we have considered and more for the sake of making PANDAS feel less isolating. I could easily make each book hundreds of pages long but I don’t want to further overwhelm people so I will try to keep them succinct. I’m happy to answer any questions you may have in the comments section or via email. If there is a specific topic that you would really like to see covered please let me know in the comments.