3 1/2 yr old with frontal lobe epilepsy

Our 3-and-a-half-year-old daughter Anna was diagnosed with frontal lobe epilepsy in November. She started having seizures when she was a baby (we now think), although we did not realize it at the time, as they always occurred at night-time, and we assumed they were just a quirk. The first thing we noticed was that about a year and a half ago, she began sleeping very badly, and waking often in a rage. After her first daytime seizure (which occurred at about the same time), we visited our local doctor (in the UK) and were referred to a paediatrician. Her seizures consisted of her gasping slightly as if she was out of breath, then trembling for a few seconds repeatedly for a minute or two, with short gaps of a few seconds in between. The paediatrician said that what we described did not sound like seizures, and suggested we come back in three months. In the intervening time, she had very few seizures that we noticed, and a doctor friend who happened to witness one said that she did not think it was anything to worry about. When we returned to visit the paediatrician, therefore, in March 2006, we were happy for him to discharge Anna. Over the next few months, she continued to sleep very badly, waking between two and six times every night, but the seizures were only sporadic. Then at the end of the summer, we suddenly began to notice her staring oddly at times, as if she was 'seeing something'. We became very concerned after we tried to talk to her during one of these episodes and she seemed unable to move her mouth, eventually saying something in a very unnatural way. We returned to our local doctor, who suspected petit mal, and were referred this time to a paediatric neurologist. By the time we came to see the specialist, the episodes had evolved again back to the clusters of short trembling, lasting a minute or so, and the specialist felt that the individual trembling episodes (still only a few seconds long) were too short for petit mal. Anna was sent for an EEG, and in conjunction with some video footage that we had managed to obtain of one of her episodes, the specialist immediately diagnosed frontal lobe epilepsy. He prescribed tegretol, in increasing doses, and although with each new dose we have had a temporary respite from the seizures (now occurring as one to three clusters of ten or so a day), after a few days they always kick in once more. In the run-up to each seizure, Anna's behaviour is difficult and she seems unable to concentrate properly. Her speech also deteriorates. After each seizure, it is as if her mind has been cleared, and she is suddenly more lucid, calm and easy-going - although sometimes also very tired and needing to sleep. Having reached the maximum recommended dose of tegretol (15ml per day), our specialist has now suggested that we add clobazam as well, although we are also experimenting with pyridoxine (vitamin B6 - 25ml twice a day) for a couple of days before introducing the clobazam. Our specialist has told us that frontal lobe epilepsy can be very difficult to treat, and we would be interested to hear from anyone who has encountered similar difficulties with tegretol but has had more success with other medications. Anna's MRI scan was normal, but the specialist has told us that nonetheless surgery might be an option once we have exhausted all the possible drugs and tried VNS and the ketogenic diet. It has been an exhausting and emotional time for us all. Anna has had good days when the medication seemed to be helping, but the seizures always seem to come back and her behaviour deteriorates. She manages to cope (just about) with going to a playgroup 3 times a week, but we worry about her starting school in September.