There's so much I want to say so that people know more about PANDAS/PANS, but I also want to be careful about Rowen's privacy. He's 12 now, and isn't too keen on me talking about his health. So, this might be the dumbed down version, but nonetheless know that we struggle- hard.
Last night we had one of our moments where Rowen was talking about being done with his life. His pupils got really big (a sign of a flare) and he went to a horrible place in his mind. The best we could do was give him some ibuprofen to reduce the inflammation and try to talk him through it. It's like fighting a killer shark with a toothpick. I just don't have the big guns in my arsenal right now.
That's where this new doctor comes in- or so I hope. I am on the hunt for someone to prescribe an immunotherapy called IVIG (Intravenous Immunoglobulin). That's the one that is tens of thousands of dollars that we are prepared to fight for if need be. This is where your support and prayers come in. We need to load our arsenal with the big guns. We've tried the antibiotics, steroids, and anti-fungals and yet here we are. I know we are still learning and will probably round the bases on those treatments again, but Autism Mom turned PANDAS Mom is tired and angry. It's an old, old hat and there are many days I'm ready to throw in the towel.
When Rowen is exposed to sickness of any kind, he flares. I'm not talking some fantastic sense of style (that, by the way, I completely missed the boat on), but the overdrive his mood goes into. When you and I are sick, our immune system produces antibodies that fight infection for us.
Thanks, guys! Until next time! (Cough, cough, sneeze)
For PANDAS/PANS kids, their immune system produces antibodies that mistakenly attack healthy tissue. Unfortunately, one of the main targets is their brain. Could you imagine what it must feel like to have your body attacking your brain all the time? I know I can't. You see what antibodies do to sickness- in healthy bodies it's a complete obliteration until you are well. There is no switch to turn this off. Sickness only makes things worse. Sickness makes him "flare," into these raging places in his mind that are completely devastating. Life is not worth living at that point, or so he tells me. That's the scariest place a mom can be.
So I'm asking for prayers. His appointment is February 18. Pray specifically that we get this treatment and that it actually helps. We need some change to happen for this guy.
