About caregiving a child with drug-resistant seizures
Stress doesn’t go away even after successful surgery
“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.
Read Eileen’s blog about parenting children with neurological challenges here.
about the author

Monika Jones, JD, is our founder and the principal investigator of the Global Pediatric Epilepsy Surgery Registry. Her first son had hemispherotomy, revision surgery, and then true anatomical hemispherectomy to stop seizures, including infantile spasms, caused by total hemimegalencephaly. You can find her research at orcid.org/0000-0001-6086-3236.
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