About caregiving a child with drug-resistant seizures

Parents of children with chronic illnesses or disabilities are at a higher risk of parenting stress. Caregiving can put a physical and emotional strain on parents, as well as healthy siblings and even extended relations like grandparents. Taking care of a child with drug-resistant epilepsy is a high risk factor for parenting stress.

Stress doesn’t go away even after successful surgery

And, even if the child is seizure-free after epilepsy surgery, parenting stress never normalizes to the level of parents of neurotypical children.

“In fact, despite successful surgery, parenting stress may even increase. For instance, parents who fostered unrealistic expectations with respect to their child’s cognitive and behavioral functioning after the surgery may be disappointed and may experience increased stress.”  From Parenting stress does not normalize after child’s epilepsy surgery. Epilepsy Behav. 2015 Jan;42:147-52.

Although parents should be offered counseling after epilepsy surgery, they often are not. That’s why we are pleased to join with several other rare epilepsy organizations including Hope for Hypothalmic Hamartomas, Tess Research Foundation, Ring14USA, Phelan-McDermid Syndrome Foundation, Dup15qAlliance, and LGS Foundation, to present a three part series on the toll of caregiving in parents of children with medical issues.

Although not a substitute for professional counseling, we hope the webinars help start the conversation around caregiving stress.

About the speaker
About the speakerEileen Divine
Eileen Devine, LCSW, has over a dozen years of clinical experience and is the adoptive mother of a child with fetal alcohol syndrome. She believes that kids do well if they can and that when we understand the way a child’s brain works, we then understand the meaning behind challenging behaviors. Eileen’s goal is to support parents in feeling more competent and confident in connecting with their child by parenting from a brain-based perspective. When this shift happens, both parent and child experience less frustration and more success in their relationship.

Read Eileen’s blog about parenting children with neurological challenges here.

Toll of Caregiver Trauma

Part 1

WATCH NOW

Toll of Caregiver Trauma

Part 2

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Toll of Caregiver Trauma

Part 3

WATCH NOW

about the author

Audrey Vernick is our Director of Patient and Family Advocacy. She is the parent of a child who had hemispherectomy for seizures caused by stroke. She holds a level 2 certification in Special Education Advocacy Training from the Council of Parent Attorneys and Advocates and is certified by The ARC in future planning. She also serves on the International League Against Epilepsy’s Social Work and Social Services Section.

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