Issues Faced as Families Living with Epilepsy
Many families and individuals living with epilepsy have experienced or live daily with all or some of issues identified below. Not all issues affect every family, child, teen or adult. The issues listed below have been identified by parents, children, teens, and adults who live with epilepsy and are members of The FraserValley Epilepsy Society. It is our goal to provide support to anyone challenge by one or all of the following issues:
1. Anti Epileptic Drug awareness:
2. Medication adherence.
4. Side effects of Anti Epileptic Drugs (AED'S)
5. Unacceptable Medial Effects.
6. Physical effects of AED'S
7. Psychological issues relating to seizure diagnosis and seizure frequency :anger, low self esteem.
8. Embarrassment and resentment relating to the fear of having a seizure in public (due to lack of education, staring and teasing are all to common).
9. Cognitive and /or developmental delays and or impairments
- physical, speech and language, auditory processing, memory loss, long /short term memory difficulties or impairments, need for additional educational support.
10. Anger and resentment relating to the diagnosis, (The loss of normality not only for the parent but for the child as well.)
11. Extreme behaviors.
12. Interactions with commonly used medications eg. for colds, flu, freezing at the dental office.
1. Anger relating to diagnosis of Epilepsy and to each seizure.
2. Medical emergencies recognizing them, knowing procedures. Effects on the child.
3. Extreme stress even resulting in marriage breakdown.
5. Individual breakdown of either parent.
6. Appropriate seizure management.
7. Extensive need for education about seizures. Correct identification of seizures is important many people/children have more than one type of seizure that may require more than one type of AED drug.
8. Overwhelming feelings of hopelessness, isolation fear and concern (magnified when seizure control is not obtained or the child has intractable epilepsy).
9. Inability to control or plan family life (resulting from poor or lack of seizure control)
10. Parenting techniques to deal with behavioral issues surrounding their child.
11. Impacts on the child's education.
12. Educational issues, identifying and establishing relative support services within the educational system.
14. Educating and teaching seizure management for anyone involved with their child.
15. Coping strategies/Lack of.
16. Exhaustion and "burn out" are all too common with out support.
1. Suicidal tendencies, depression, acutely low self esteem.
(Any teenager today is a handful, added issues of drug side effects and the behaviors they produce can be devastating.)
2. Extreme dangers of drug and alcohol experimentation.
17. Understanding of safety issues relating to seizures.
18. Independence- e.g. Ability to drive.
19. Maintain employment.
20. Disclosure and it's social stigma.
1. Anger, fear, and depression relating to the diagnosis.
2. Employment issues including:
5. Ability to maintain gainful employment.
6. Socialization anxieties: sexuality concerns, alcohol intolerance.
1. Coping with drug side effects.
2. Drive- maintain independence.
3. Capability of maintaining parental responsibilities.