Went to the Epilepsy Center today. We have no regrets. It was a pleasant visit (as far as a visit to an epilepsy center can be pleasant). No hospital ambience at all, a quiet, clean building in the woods, with furniture in soothing green, blue and brown, nice staff.
The doctor was very 'undoctorish'. Professional, but without the usual distance. He agreed that a longer EEG (48 hours) with video monitoring would be useful to understand if what we see on the outside is or isn't epilepsy on the inside. We know that Kalle's EEG's are bad, so we don't expect miracles. But we just want to get a better picture of the seizures, in order to make better decisions in the future. Another thing is: Most of the times we - the parents - tell the doctors what we see when Kalle is at home. And yes, there are short EEG's that tell us that Kalle's epilepsy is bad. But it feels like a huge responsibility that some decisions are made based on what we see and on what we tell the doctors. A longer EEG might lift some of that weight off our shoulders.
We are now waiting for the EEG appointment (anywhere between now and a couple of weeks).
After a really, really good monday and a very, very bad tuesday yesterday and today were okay. A couple of seizures, but not as much as on tuesday. Kalle had a good night and was pretty relaxed during the day. Now he's sitting on Jan's lap, without diaper and pants (fresh air is good for everyone and everything)... he already peed three times while he is drinking his bottle :-)