I thought with all this talk of how IVIG works, we should talk about what happens to symptoms of PANDAS after IVIG treatment.
Our first IVIG I think I was expecting a slow recovery. I had heard the term “turning back the pages” to describe outbursts of PANDAS symptoms after IVIG. I had read that it could last a few hours to a few days. I think for us it lasted a solid two weeks. Everyday I remember being fearful to even wake him up in the morning (if we were lucky enough to get him to sleep the night before). I had to wake him by 9 to give him the psych medicines we were slowly weaning him off of. I would allow myself until 8:59. If I was lucky, I would be working and the babysitter would do it. She didn’t get quite as much heat about it.
After 2 weeks, school started and I kept my phone close praying he didn’t flip out on someone. He fell apart at home almost every night the first few weeks of school. In mid November he popped off to a teacher in the lunch room. I don’t know what he said but that was the beginning of the slide backwards. The next morning I caught him trying to close the van door on Sydney while holding her. I called for Manish to call the specialist in Chicago and we set him up for a second infusion in late December, one month later. We did give him a few weeks to see if it was just a blip….but no, he needed that 2nd one.
The side effects were not as bad as the first, though we gave him steroids to prevent anything massive. Then I began to literally watch him “turn back the pages”. He started sniffing everything again, his first symptom when it all began. I knew when he had art because his nose was the various colors of paint. He also had an obsession with his mouth again…another one of his initial problems. I remember one babysitter unknowingly taught him how to cross his eyes and for 48 hours he crossed his eyes and stuck his tongue out uncontrollably little by little it dwindled and by April most of his remaining tics from PANDAS were about gone. We decreased his augmentin dose to the lowest dose recommended to prevent an infection and his gains held. He went on vacation with my parents and had no difficulty.
We tried a 3rd one in August of 2011. The reason was simply this…my little boy, who this disorder took from us, was someone I had never known. Each IVIG gave us little pieces of the amazing kid we have now. I wanted to know if there was more there that we were missing….there was.
For those of you who have read our story, please go to www.amazon.com and look up Joshuas Missing Peace and leave a review!