MAE is still not fully understood or explained. Parents often ask:
"Why does my child have MAE?"
While studies support a strong genetic link for MAE, no one knows exactly why some children develop the disorder. It is classified as an idiopathic or cryptogenic epilepsy because there is no known cause for the seizures. It doesn't mean there is no cause, it means we don't know what the cause is (ie, no structural abnormalities of the brain). The only known risk factor is family history, and even so, there are still some children who develop MAE without an identifiable genetic association.
"Do children outgrow MAE?"
Yes! There are many successful stories on this site featuring children who have outgrown MAE. In some cases, the seizures just spontaneously remit.
In other cases, the ketogenic diet or drug/ACTH therapy have been successful in controlling the seizures long enough to allow the brain to "outgrow" the seizures.
The good news is that as more effective treatment options become available, the prognosis for children with MAE continues to improve, and more children have the chance of "outgrowing" their seizures. See what's worked.
"Why aren't the medications working for my child?"
It is not yet known why some children with MAE do not respond to medications. In many MAE cases, the medications can actually aggravate the condition and increase the child’s seizures and/or unmask new seizure types. Some children with MAE are more susceptible to this paradoxical seizure reaction to medications than others. Additionally, myoclonic (jerk-type) and myoclonic-astatic (drop type) seizures, the most common seizure types associated with MAE, are notably difficult-to-treat seizure types.
"Why is MAE so severe?"
MAE is characterized by difficult-to-control seizures that often occur frequently throughout the day. This can potentially impair and/or disrupt a child’s learning and development opportunities. The focus for parents and treating doctors is to reduce seizures as much as possible. While some children may not have 100% seizure control, their ability to learn and develop can improve with a reduction of seizures. If MAE is well controlled, many children are able to pick up where they left off and make up for the time lost to uncontrolled seizures.
"Is surgery an option?"
Because the seizures of MAE are generalized, meaning the abnormal electrical activity occurs spontaneously on both sides of the brain – they do not originate from a focal point in the brain – surgery is not an option. Epilepsy surgery is only indicated for those whose seizures originate in a specific area of the brain that can be removed safely (eg lesions on a part of the brain).¨