Renewal: PANDAS Update #5

I do not know how Catherine is still going. From Tuesday into Wednesday, she slept about 8 hours, and then didn't take a nap. Last night into today, she slept less than 4 total and took an hour nap. She is hyperactive, jittery, and overall, not my little girl.

We met with the psychologist yesterday. She seemed to be very open to the fact that she doesn't know a whole ton about PANDAS, but has helped PANDAS families, and is open to helping us. She gave us a few good resources on which to build, and hopefully, those stick. We threw those out the window today. Catherine was so out-of-control I had no idea what else to do but yell. When I raised my voice, she would listen, but barely. It makes you feel like a crappy parent.

While they were in the basement with the neighbor girl, I took a shower. But I didn't actually take a shower. I took a break. A break from the incessant noise. A break from the incredible stress. I cried. I let it all out. I tried to gather my wits about me. I am so stressed out, I feel sick to my stomach most of the time. I can hardly choke anything down. I am exhausted all the time. Monday night was amazing. We PLAYED. As a FAMILY. It was amazing. Absolutely transformational. It was hopeful.

That shattered at 5:37 a.m. on Tuesday morning, when Catherine was trying to get out of her room. She couldn't open the door. So she threw herself at it, incredibly frustrated and furious at herself that she could not get it open. She threw herself on the ground. She worked herself into such a state that when I opened the door, she barely seemed to recognize me.

Last night, Eric and I watched, "My Kid is Not Crazy." It was a documentary about PANDAS that came out last year, and follows 6 families who had children diagnosed with PANDAS. 4 children came out of it. They got better with IV Ig (NOT covered by our insurance), therapies, and a lot of love from parents who wouldn't give up. Antibiotics helped.

2 of those families had kids who didn't bounce back. Of course, you have to look at the course they were on. Doctors who didn't know, parents who didn't do enough research, or had children who were diagnosed too soon in the controversy. One doctor put it very well: "We believe that strep causes inflammation of the skin, called Scarlett Fever. We believe that strep causes carditis, inflammation of the heart, called Rheumatic Fever. Why wouldn't we believe that strep could cause inflammation of the brain?"

And because of this controversy, there are doctors who truly don't believe this exists. Walk a day in my shoes. I can tell you, this DOES exist and it's very real.

I cannot fathom going back to school. In two weeks, I have a retreat for my select choir. I have not begun to even plan for it. I haven't ordered All-State Music. I haven't done anything to prepare for school like I normally do. I would like to get back to my normal life, but what about this life is actually normal? Not much.

At our psychology appointment yesterday, she said we wanted to "Encourage Bravery" in Catherine. I need to encourage bravery in myself. To not be afraid of what I am going to wake up to the next day, and instead, meet it head on. To take Catherine's tics and jerky movements and odd behavior in stride, instead of being paranoid at when the next shoe will drop. But it's so hard. Because we have seen glimpses of who Catherine can be. And we have seen glimpses of who Catherine is NOT. And that is what scares me the most.

I could kill myself over the what-if's, and I try not to, but after talking with the intake nurses at the Psychiatrist office in Minneapolis that I called a few days ago, they can't get us in until December. Really? That is a long time away. How much longer can we wait until there is permanent damage? Until we CAN'T come back from this?

I wish this blog could go back to my days of pregnancy updates and monthly milestones, rather than this cursing of PANDAS. But here I sit, at my dining room table, watching a little girl who should be exhausted run around the ground floor with a bow in her hair. It's pretty cute that she thinks it's the greatest thing ever, but at the same time, I can't help but wonder how tired she must be. How absolutely tired her body must be.

And how much MORE tired I can get. Here's to another day, another PANDAS update, and another course of antibiotics. The naturopath is tonight. Wish us luck. Pray for us. And someone, please help us.