A few needle pokes (one that busted the vein and painfully shot saline right into his bloodstream- eek!), and Rowen was wired for sound. He had to get a bag of saline in his line before and after the infusion to ward off side effects. In all, it was about 8 hours a day for 2 days running all while pumping Rowen full of as much Gatorade and water as possible. He was a trooper though. Promising him an all day video game session wasn't a hard sell.
He carried the fluids bag around in a little black bag so he could be mobile around the house. We had sweet friends stop by with balloons to wish him well. All in all, it wasn't bad experience. The next morning, however, Rowen woke up with the worst headache he's ever had. It was so bad he threw up and nursed a pounding head the rest of the day. As hard as that was for him, it was much better than I'd expected.
If I said I didn't have my hopes up, I'd by lying. I hear so many say that IVIG was an instant turn-around so naturally my brain landed there. I saw nothing. In fact, he seemed worse. I knew that could happen too, but I was optimistically naive. Here we are three weeks out and I'm not sure I've seen a huge change yet. Maybe a little more mellowed out, is all I can say. I know I need to be patient, but after 10 years my patience has run thin.
I'm reading a lot about infectious causes and it's astounding. "Our bodies are not in symbiosis with organisms any more because our bodies are no longer in symbiosis with our environment" is something that resonates. The sad fact is that we are just in too deep. I know I'm a crazy conspiracy theorist, but forgive me if I don't have a lot of hope in our system right now. We are on denial number 4 for the IVIG through our medial insurance based on the fact that PANDAS and PANS doesn't really "exist." Thank goodness our prescription carrier stepped up and covered it for us. And speaking of infections, we have to dig to find them all. Unfortunately, we are just getting started. Because he's been diagnosed with strep and mycoplasma so far, this technically makes him a PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome) kid. So we are dealing with PANS, not just PANDAS (strep). I was wrong again.
Many of you have asked when we will do another treatment. My lack of patience at this point has us scheduled for our second infusion next week. Thank goodness for that, but I don't know where we will go from there. I've been looking into treatment options in Arizona and New York. On top of all the supplements we buy each month and out of pocket doctor visits, it isn't financially easy. I just need direction, but that isn't readily available for what we are dealing with. So I continue to be the mom that spends a billion hours researching to come up with the next great thing. In the meantime, we will likely consider scheduling a monthly infusion to see where that gets us.
When I catch a glimpse of my boy (sans a PANDAS/PANS flare), it's all the motivation I need to keep going. And if I'm being honest, those moments where we are pushed to the edge because of this maddening illness are the times that also propel me forward. There have been many moments I've said "I can't do this anymore," but we always do, don't we? God doesn't let you have more than you can handle. Well darn, He must think I'm superwoman.
