My son was born with intractable epilepsy. At birth he had some respiratory distress so was put into NeoNatal ICU, where the nurses noticed he did strange twitching movements. 9 days later he had his first Tonic Clonic seizure.
After 2 months in the hospital, an MRI, numerous EEG's, 2 lumbar punctures, the possible diagnosis is a rare form of epilepsy called Early Myoclonic Epilepsy (EME), with the outcome not being very good.
He has daily seizures as he is unresponsive to medicines. Currently he is on Topamax, Rivotril, Keppra and we are weaning him off Phenabarbitone.
When he has the grand mal seizures, he screams / shouts (he is only 12 weeks old), sometimes becoming very high pitched screaming. What i'd like to know is does it hurt when having a grand mal seizure, as he looks and sounds like he is in pain but I have no way of knowing.