Kalle is not a candidate for epilepsy surgery. no surprise for us because Kalle has so much damage on both sides of his brain. So no surgery. No shaving off his pretty curls, no drilling a hole in his skull. No cutting in his brain.
What now?
The doctor suggested another antiepileptic drug ('AED'). But we just weaned off the sodium valproate ('Depakine'). Now we want to see if Kalle feels better or worse. But his other AED, vigabatrin ('Sabril'), needs to be weaned off, too. Usually you shouldn't take this drug longer than 6 months because of the possible side effects: you might develop tunnel vision which never gets better once you got it. Kalle started more than a year ago (and there is no way to check his eyes cause he can't tell what he sees).
The neurologist doesn't want Kalle to be without any medication. He expects more seizures. On the other hand: the meds never showed any effect on the EEG's. So now we decided to start weaning off the Vigabatrin veeeery slowly. If we might see more seizures Kalle will get another AED.
Still lots of phlegm in Kalle's respiratory system. Not good. We hope that weaning off (a part of) the Vigabatrin also means being more awake. That might help Kalle to swallow 'better' and cough easier. We'll see.
Tooth no. 9 is almost there. Kalle doesn't like those weird things in his mouth. But at least it looks cute :-)
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| Big brother Kalle chilling with little brother Liko |
