dinsdag 31 mei 2011

Result EEG & an unnecessary visit to the epilepsy center...

A couple of weeks ago Kalle had his 24 hour EEG with video monitoring. Today we went back to the epilepsy center in order to talk about the result and possible next steps. After a 1:45 drive and some waiting we learned that the result still wasn't available. No official result in the computer yet. Great. The neurologist called the guys who analyze the EEG's so we would at least hear a small summary. Here's what he told us:

- Everything we suspected to be epilepstic activity actually is epileptic activity. No surprise to us.
- Most seizures seem to come from one place in Kalle's brain, which is remarkable because the brain damage occured in lots of different places. The 'good news': If this is really true Kalle might be a candidate for epilepsy surgery. They have to check earlier EEG's and brain scans and then discuss Kalle's case in some epilepsy surgery working group. That result was a surprise to us because it's so different from earlier EEG's. But: this was the first long EEG with video monitoring, so the results are much more reliable.

Just after we got home we got an email from the neurologist, with the official result... Additional information:

- Kalle has epilepsy 40-80% of the day
- He has slightly less activity at night, but his sleep isn't very 'effective'. Almost no difference between the differents stages of sleep.
- There's more activity on the right side of his brain, which also surprises us because there's more damage on the left side.
- Some activity matches the symptoms of West Syndrome, others don't. Possible conclusion: the epilepsy is changing (...so...?).

So now we just have to wait. That's okay. Kalle had some really good days during the last couple of weeks. Some really bad days, too. But the good days were good enough to accept the current situation. We won't think about possible surgery until the doctors analyzed the other EEG's and the scans. Just thinking about it for one second scares the hell out of us.

After spending hours in the car for nothing Kalle didn't stop crying and having short seizures for hours. I think he felt as grumpy as we did....

(good mood before we left to the epilepsy center...)

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