Struggling for Answers

March 15, 2010

As many of you were aware of already, today was Katy’s EEG and our meeting with her neurologist following last week’s seizure. So, just what did we discover?

Pretty much the same infuriating answer we get every time we go to a doctor, lately: “We’re not really sure…”

Shel and I have just about resigned ourselves to this seeming fact: We’re on our own. Nobody has the slightest clue.

You want to know what I came away with after everything today? Botox. I’ll explain in a minute. We started this morning at 5:30 giving Katy a shower. It was the only way we could think of getting her to actually wake up – and stay awake. And it worked beautifully. She was doing great all day until they started to put the electrodes on her head. This was unacceptable to her. This battle lasted probably a total of two minutes in actual time. Seemed like about 20 to me as I tried to hold my exhaustedly thrashing child in one place. She actually did great after the initial struggle. Went to sleep by about 1:15. I carried her out of the room at 1:45 and we were in Dr. Callahan’s office right at 2. At least the trains were running on time.

But all we got accomplished today was getting a plan in place, pharmaceutically, if another seizure occured. The EEG showed a very similar pattern as the one she had three years ago: spikes in the right temporal lobe of her brain every so often. So, now, evidently, we wait again. And hope this first one was it.

So back to the botox. Shel asks the doc about Katy’s foot issues. Doc asks us: “Have you talked to your geneticist?” Let me tell you something, our geneticist has done exactly one thing for us: convinced us that there may be something else that was causing Katy’s problems and not CP. Since then – absolutely zilch. We’re the ones who have found any articles on the subject. We’re the ones doing all the research. When you have one other person in the world that you know of with your condition, you’re on your own. That hit me really hard today. Eventually, doc tells us this sounds sounds like focal dystonia – which affects a muscle or a group of muscles causing an undesirable contraction. The treatment: Botox. And then hope that the brain can rewire itself to eliminate the dystonic movements.

I mean, what do you say to that? I guess it’s just another issue Katy faces that doesn’t really have a cure. We just keep treating the symptoms without any clue what the underlying problem is that her genetic condition causes.

To top it all off, we get home and Shel finds an anonymous typed note in our mailbox with this on it: “Your front, side and back yards look like a garbage dump along with that fence on the side of your house. Clean the mess up.”

Nothing like understanding “neighbors” to really help you through your day. Not exactly sure where they get “garbage dump” from, but hey, to each their own. I guess when you have a corner lot and everyone can see every inch of your yard, if people want to bitch, they’ll find something. The sad part about the whole thing is that I tried to have our privacy fence up this past weekend, but the ground is still frozen there on the North side of the house. I couldn’t get the posts in the ground! Hell, I couldn’t even get a shovel in the ground. Evidently, I was supposed to take a hair dryer to the ground for a while…

Deep breaths.

For every maddening thing that goes on with our little girl, there are hundreds of precious moments each day and I’m trying to treasure them as much as I can. Today, it was a sudden infatuation with the word “family.” If you said it the right way – and only a certain way – she would belly giggle while she did her version of a dance by wiggling her body all around. A constant dose of this at dinner tonight helped me come out of my post-doctor visit funk.

So, what does it look like? Here you go:

Still waiting to hear from Mayo and just hoping they may be able to give us some answers.

Trust in hope,
Todd

{ 2 comments… read them below or add one }

Amanda March 25, 2010 at 8:59 am

Todd,
Kathy told me the whole Botox story. I completely agree with you that it is NOT needed at this time! Tim and I will continue praying that Katy has no more seizures! Katy’s new thing that she laughs at for me is when I shake my head no and my hair hits me in the face….she thinks it’s hilarious!!

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Todd April 1, 2010 at 8:22 am

Amanda- Well, if the Botox thing did one thing, it made me get off my butt and start working with her daily on stretching her legs and her ankles to help with her mobility – or her “exercises” as we call them. So far, they seem to have made a big difference. While she’ll still hold her ankle in that twisted position, she’ll move it back to normal without any problems now. We’re also going to see about getting her out of her AFOs. While I understand the reasoning for them, they seem to do more harm than good for her right now. We’ll see… Thanks for reading and thanks for everything you do for Katy!

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