Saturday, March 31, 2007

March 2007 Update: Cocci Study

We participated in a 3 mile ABI (acquired brain injury) awareness walk this month, and here's a picture of Denise cooling down with the kids. Months ago I was put into contact with a man whose wife was hit by a car in September and is ever so slowly recovering in the hospital. Meanwhile, he's trying to maintain some normalcy... grappling with balancing caring for her, keeping up with work, and raising a daughter & son that desperately want mom back home. Sound familiar?

Last month the neuro doctor said to try lowering the already very low dose of Risperdal. That didn’t work well, as we had some issues and Denise had a very bad day that required me to leave work. She went back to the previous level and things evened out. So we'll look into trying something different in hopes of finding the right meds and the right timing.
My nurse aunt & I went to Phoenix AZ for the "Cocci Study Group." It was incredibly informative! We had access to the best of the best in cocci research and treatment. Several doctors took the time to hear our concerns and offer advice and encouragement. After having gone to the cocci symposium at Stanford in August, I felt much better-prepared going into this meeting. We found out that there is one other case of a pregnant woman with cocci in the brain. In her case, she did have a baby (born at 8 months gestation) and has been out of the hospital for about 5 months. I don't think her situation was as grave as Denise's. Still, it's remarkable that she survived with cocci in the brain. We also heard of a case where a man contracted Valley Fever without living in or visiting a cocci-endemic region. He purchased a vehicle from a cocci-endemic region and had it delivered to his home. The dust in the vehicle (and in the AC ducts) contained cocci, and that made him ill. I could make this quite a long post if I were to relate everything that I learned (and I only understood a small fraction of what they were saying). One very helpful doctor commended me on jumping in to learn about cocci. He said it's not one of the simpler organisms, nor a simple disease to understand. So that made me feel less stupid.
The high point of the weekend for me was that in the restroom, the Grand Poobah of cocci research chose the urinal next to mine in which to pee. Wow!


Anonymous Pam in Maryland said...

Wow, wow, and WOW!!! What fabulous news!! God is so good!!!

April 30, 2007 8:35 PM  
Blogger Michelle said...

God is Good and His mercy endureth forever. I was 18 in 1995 not feeling good(sweating at night, insomnia, back pain, hip pain until I had a little limp), went to the hospital (ER who thought I had TB) and found out that I had disseminated cocci, After 6 months in Good Samaritian Hospital in Phoenix(My home town) I came home and had a nurse for another ohhh 4 months. This was before alot of the new therapies where out. God gave me grace and mercy, and I write today to tell you that you can be healed completely, body and mind. I know what it feels like to worry, but I know By His Stripes I AM HEALED. That is my testimony

June 16, 2007 9:14 PM  

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