Q: Hello, I am currently in a very frustrating situation. My son's neurologist was about to start a trial of anti-seizure meds based upon my description of my son's symptoms (specifically all pointing to complex partial seizures). However, our pediatrician thwarted the process by saying that my son had "emotional difficulties". We have an In Home Therapist who tried his best to "educate" the pediatrician to no avail but did "get through" to the neurologist who ordered diagnostic testing. However, the video EEG and MRI were both "negative" for seizures and I was told that this absolutely rules out complex partial seizures!
I have been urged to pursue this by a few doctors who are participants on an online support group I subscribe to as well. They have followed this for months with me and say that the locus of the seizure activity could easily be deeper than a scalp EEG can detect.
I wondered if you could provide some documentation I might share with my neurologist or at least point me in the right direction. I have contacted the Epilepsy Foundation in my area but still am searching for as much "ammunition" to pursue this as best I can.
Thank you so much
A: The diagnosis of epilepsy can be very difficult, since there are a number of illness that can mimic epilepsy. One of the most difficult to sort is behavioral episodes. To a large extent, the diagnosis of epilepsy is based on clinical grounds, and most laboratory studies do not absolutely include or exclude epilepsy.
Videomonitoring is a powerful tool, but does have its limitations. If no typical spells occurred during the recording session, then the study would not exclude epilepsy. Occasionally the seizure discharges are not picked up on a scalp recording, but this is minimized by recording several spells and use of special recording techniques. There are also potential differences in quality of recording from hospital to hospital, and seizure abnormalities can be missed.
While there is often good justification to treat for epilepsy based on clinical grounds, there is always another side of the coin. Treating a person with medications when they do not have the illness may lead to other problems. If you still are unable to get your physicians to reconcile their opinions, consider getting an outside third opinion from a comprehensive epilepsy program.