pixiesdaddy

Thanks for posting that. We were just noticing over the last few weeks that our dd's diet completely changes with her mood and pandas symptoms. You can almost tell what kind of a day she's going to have by what she's asking for for breakfast. Dan

It's 10:40 p.m. - both children have been asleep since 8:30, thankfully. Both Pixiesmommy and I have realized we can barely speak, we're so tired tonight. Actually, Pixie was good today, if incredibly manic. Hyperactive, ideas and words rolling faster than she could think, lots of physicality - swinging really high on the swings, volume really loud, etc. But, she didn't hit anyone or murder anyone today. It was a good day. Actually, she's been okay for two days now. But both of us can tell it's kind of a thin veneer. Nothing has pushed or challenged her, so she hasn't had to deal with frustration for a day or two. Dan

Hi, This is pixiesdaddy. Finally registered and got on here too. I saw that Manda hadn't posted a latest update, so I thought I'd vent and continue the story. We saw Dr. K yesterday. He wants to go ahead with IVIG, which is great. Got frustrated today because I thought we were going to be able to actually schedule it, but it looks like we need to wait through the long weekend just to try to get a date. I really had my hopes up to get her the treatment this coming Thursday, but I guess we'll wait and see. It's taken us a long time to get to this point, but now that we're here, I'm in such a rush to move forward. Spoke with Pixie's school, and they seem like they will be accomodating towards letting her come back post treatment if things go well. That's kind of a scary thought though. I know from listening to Manda, that many kids have saw-toothed up and down days after IVIG. I don't when we'd be able to "guarantee" that Pixie wouldn't have an outburst at school. That seems a lot to ask, even from a totally healthy kid. I'm kind of kicking myself for having her in an area where private school was the best option. I'm a public school teacher, and I know that a public school can't kick a kid out for a medical issue. This was a very surreal day with Pixie. It was supposed to be my first day back to school to teach. Felt very out of place. I can only imagine how Pixie feels. One day she's in school, and then the next her whole life is upside down. In my head, I count days. If we have the IVIG on this day... and then she recovers for this many days... then maybe she could be back in school... and I could be back in school... and life could be... but I know that I'm just fooling myself to believe that there will be something predictable about this. Anyway, at least it is a hopeful sign that IVIG is now on the near horizon. That at least means we can take another step down the pathway towards figuring this all out. Pixie's Daddy (Dan)