The Results

We finally got our call from Soren's pediatric neurologist today. Unfortunately, it was not the news we wanted, but it was the news that we had figured. The test results are not definitive enough to perform surgery.

The EEG showed that there are more things going on in the left posterior of Soren's brain than the right. But there are still things going on in the right.

The PET scan showed diffused abnormality, but more on the left than the right.

And the MRI was also "diffusely abnormal" with no clear area to perform surgery on.

So they felt that performing surgery on Soren would not clearly benefit him.

But, this is, of course, not the final word. We now plan to get copies of the tests and get 2nd opinions. You never know if somebody might see something differently. And there are certain surgeons out there who are willing to try something more "daring."

We also went to Soren's pediatric neuro ophthalmologist today for a check up. While he could see that Soren's eyes were still good and straight, he was disappointed that Soren had not made more progress as far as looking at objects when asked. Of course, Soren is more than happy to LOOK AWAY from an object when asked. And whenever the doctor turned away to get a new toy, Soren would look straight at him. Stubborn, opinionated, and crafty. Aaron and I wonder where he could have possibly gotten those traits.

As usual, the "answer" to all this is better seizure control. Which is why we are now considering putting Soren back on a low dose of Zonegran to combine with the Lamictal he is already on. We had a good year of seizure control when he was on these two drugs, though we thought it was just the Lamictal that was helping. When we weaned him from the Zonegran, he became much more alert. But a month after he was off the Zonegran, his seizures started slowly coming back.

So there we are, with more information, but still in the same place. Frustrating, but we move forward.

Amy