Prognosis

The long-term outcome for children with MAE is highly variable. The spectrum ranges from complete remission and totally normal intellectual development to therapy-resistant epilepsy which can result in mild to severe developmental delay. Presently, newer therapies have significantly improved prognosis but outcomes are still unpredictable and varied.

In a published series of 81 patients with MAE, 68% eventually became seizure-free. As for the intellectual outcomes of the 81 patients, 60% showed a normal IQ, 20% were borderline or had mild developmental delay, and the remaining 20% had less than moderate developmental delay. The earlier the remission of the epilepsy, the better the outcome which means that seizure control is the key. (It is reasonable to assume that if the seizures do not respond to treatment and occur frequently on a daily basis, they have the potential to impair learning and development and result in mild > severe development delay.)

Bear in mind that this study was carried out when newer anti-epileptic medications and treatments - now proving to be highly effective for MAE - were unavailable. The good news is that outcomes for our children will continue to improve because the success rate of treatments trialled is gradually but constantly improving.

It seems that there is no distinct defining feature of the disorder that can help us predict an outcome. Earlier studies claimed particular features were associated with unfavourable outcomes only to be debunked in later research and contradicted by our very own personal experiences. A family history of epilepsy and incidences of non-convulsive status are reported to be risk factors but, again, some of our own personal experiences contradict this theory.

Factors such as the severity at onset, seizure frequency or predominant seizure type/s will not help us predict where the disorder is headed and are not necessarily associated with favourable or unfavourable outcomes. Based on personal experiences, some of the most severely affected children have eventually entered remission, picked up where they left off and never looked back!