May 2010 Kalle's EEG revealed epilepsy for the first time. By that time we hadn't seen any seizures yet, but apparently the epilepsy was 'in his head' already. Kalle immediately got his first AED's (antiepileptic drugs). And how crazy it may sound, his first seizures started. The meds didn't work properly.
First we saw unvoluntary muscle jerks of one arm every now and then. Weeks later we noticed Kalle's first 'head turn': During that type of seizure he turns his head from the left to the right, his hands open and / or his arms move upwards. At the end of a head turn he sometimes smiles and even makes silly laughing sounds.
The head turns and the muscle jerks got stronger since last summer. In february Kalle had one of his first real clonic seizures that usually last 10 - 40 seconds: one or two muscle jerks a second. Arms, head, eyes, eyebrows, panic in his eyes. Sometimes he makes sounds, like he is really scared. His legs feel tensed, his feet are turned inwards. Those seizures look and feel pretty scary. If they would last too long (minutes) we would have to give Kalle emergency medication to stop it.
Kalle never smiled a lot. In the beginning he was too sick. Than he was recovering, unhappy. Just before the real seizures started there were a couple of weeks he smiled a couple of times. He even laughed when I tickled him. That happened maybe 5 or 6 times. What a blessing. The smiling and laughing stopped when the seizures started. That happens a lot when a baby gets West Syndrome, the type of epilepsy Kalle developped.
Sometimes people see one of Kalle's 'head-turn-seizures' and they think he is really smiling. I must admit, he looks cute when it happens. We know it is epilepsy, but at least it doesn't look as scary as his clonic seizures.
Today I thought: If the clonic seizures with the panic in his eyes make us sad and scare us, why shouldn't we be glad to see Kalle smile during a head turn, even if it's epileptic? Remembering how he looks if he smiles or laughs can help us to look forward and give us some hope that maybe one day Kalle will really smile and laugh again. Because that's what a happy kid is supposed to do.