Finally, some answers!

I got a call back today from the lovely nurse over at the Neurology department down at Children's, oh how I love her. It was pretty much like an appointment over the phone, she answered ALL of my questions and talked to me for about 20 minutes, she is wonderful!

She spoke with Truitt's Neurologist about what Truitt is doing (the constant twitching) and he is pretty convinced they are in fact seizures. You may be surprised, but I was so glad to hear that. I know to expect him to have seizures the first two years of his life, and although they are so hard to watch, it is just a part of his condition. My fear was they would tell me to bring him in, see what he is doing and then have no idea where to go from there. I'm glad they don't think it is some other condition for us to deal with.

They are assuming that the problem is that he didn't respond well to the Topamax. Yes, $357.99 later, it didn't even work for him. Ouch. That's a bitter pill to swallow. I have to admit, he never did go even a day without twitching ever since he has been on it. So the new game plan is to try Keppra. It is also a very commonly used seizure medication. The hope is it will work and poor Truitt will finally be able to enjoy his life again!

More good news, I already called CVS (you know since we still don't have insurance for him and our last experience was more than horrible) and I am just being responsible about our finances (or preparing myself ahead of time for another hefty amount) and the cost without insurance is only, drum roll please....$23.50! Yes that's right, we can afford that. I'm breathing a little easier.

They will watch him for the next few weeks, see how he does, and then wean him off the other two medications. I am really hoping this works out for him, I forget how good life used to be before he started having these seizures again. I am looking forward to that life again, just sooner than later.

It's about time we got an answer.

I think we can all agree on that!

Lauren