How often do you have EEGs?

[i love to run]

How often does your neurologist recommend follow-up EEGs? My son's ped is recommending one every year as long as he's doing OK to check for changes. Is that a normal time frame?

 

[Nakamova]

I think neurologists may have different protocols depending on the definitiveness of the diagnosis, the patient's age, and their history of seizure control. If the seizures are completely controlled and the EEG is negative as a result, there's no particular need for additional EEGs unless there's a plan to reduce or taper off meds. With someone whose diagnosis is unclear, whose EEGs are abnormal even on meds, or whose symptoms aren't fully-controlled there may be more of a need to monitor any changes and perhaps modify the meds as a result. I think there may be more urgency with a child, where you want to prevent both seizures and meds from affecting his/her development.

Is your son symptom-free at this point? Is he on meds, and if so are there noticeable side effects? Those would be part of the equation.

[If you're cynical, you might wonder if EEGs are a good source of income for the those referring and administering them.]

It never hurts to ask -- has your pediatrician offered a specific reason for the EEG schedule?

 

[i love to run]

His diagnosis is officially simple partial seizures. He likely has benign rolandic, but the eeg was not the hallmark, definitive eeg for diagnosis. THe spikes were unilateral instead of in both hemispheres, which is sometimes seen. He also has had daytime seizures which isn't the typical nighttime seizure, but definitely not unheard of either. He is pretty sure it's an atypical rolandic epilepsy.

His seizures fit the outline of BRE to a T....from the tingling cheeks and tongue to the twitching, even the age at diagnosis. His MRI was clean. He takes no medicine and hasn't had a seizure since September, knock on wood. He will have some tingling from time to time but that's it. It is my impression that he does them with BRE kids until the EEG is normal or they have been seizure free for 2 years. He usually pretty conservative with testing and medication so I don't really have a reason to believe he'd be doing it to line pockets, thankfully.

Our son has never seen a neurologist, although the option has been given to us. Our ped said that he was pretty sure the neuro would recommend meds and the benefits didn't outweigh the risks in his opinion. Neuros tend to medicate quickly in his experience and since we've had 4 very short, easy to handle, minor seizures in 14 months, it wasn't worth medicating. So we opted not to see her and she's on consult for him only.

 

[Nakamova]

I think your pediatrician's judgement is sound: Best-case scenario, the simple partials lessen over time and there's no need for meds. But just in case things start to go in the other direction, it's worth knowing sooner rather than later (via EEG), and then deciding whether to consider a change in treatment.