Hi. My name is Emma. My son was diagnosed with a rare brain condition called Periventricular Nodular Heterotopia at 10 weeks of age. He is now 13 months old. So far this has lead to complex epilepsy. He is on Phenobarbitone, Dilantin, Topiramate & Clonazapam three times a day. When he has a seizure with give him intra nasal midazolam. I am very interested in talking with any other parents who have a child with PNH. I would also like to talk to other parents who have children with epilepsy.
I look forward to hearing from you.