Mothers of children with epilepsy came together to found CURE (Citizens United for Research in Epilepsy) in 1998. This non-profit organization is dedicated to finding a cure for epilepsy. The parents who started this organization were frustrated with their children having seizures and the many side effects of medication.
Some children can have a status seizure which is a continual seizure that the brain is not able to control, nor do medications help. When this happens, severe brain damage usually occurs. A child who has had this happen can have bad days in which they are sick and can’t do much, and the days that are good they may be excluded because of their now limited mobility. Siblings of children with epilepsy can find their world revolving around their sibling, and that world can include repeated disappointment by not getting to do what they had planned.
Being the parent of a child with epilepsy can have it’s frustrations as well. The child may be exhausted for several days after a seizure, as is the parent. There is also a fear associated with seeing your child seizing. Children who experience a sibling seizing can also be afraid and ask if their brother or sister can die from it. While a parent may not want to further put fear in that child by saying yes, it can happen.
A Child’s Behavior and Mental Abilities May Change Drastically
Some children who have epilepsy can exhibit aggressive behaviors such as pulling their hair out, hitting others, or turning knobs on (such as stove knobs). Children who may have a seizure at school can get teased and made fun of, further hurting their self esteem. Many times these children can feel ostracized.
Many parents notice a decline in their child when it comes to mental tasks. The brains of some children aren’t equipped to handle seizures and a gradual decline in their cognitive and developmental abilities happens. They can also experience psychological disturbances. As many of these children grow up it becomes apparent that they may not be able to hold a job, go to college, or even live on their own. It is a disappointing outlook. Some children have a noted decline in their IQ of over 40 points. Many of these children start out with very engaging personalities and a sense of humor, which can quickly change.
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