Brain surgery to stop seizures in children is not a last resort.
The idea of brain surgery to stop seizures in children is scary. Parents want to know whether surgery will work … but more importantly, what will happen after surgery. “Will my child walk? Will she talk? Will he learn to read? Will my child be … normal?”
Back in 2011, we started The Brain Recovery Project to fund research to help us understand how to help children reach their full potential after hemispherectomy surgery. This meant we first needed a good understanding of functional outcomes – how children recovered in areas such as physical, behavioral, cognitive, and social functioning – rather than simply whether the procedure stopped a child’s seizures. Read more …
How we help
Our website has research-based, reliable information to help parents and caregivers understand when a child’s seizures are drug resistant. We explain the risks and dangers of seizures and help families weigh the pros and cons of the various brain surgeries to stop them.
Understanding what to do after surgery can be overwhelming. We help parents understand the medical, cognitive, and behavioral challenges a child may have through life, as well as guide parents through financial and life care issues. If parents want to connect with other families, or need IEP help in school, we’re here to help.
For the neurosurgeon, neurologist, or other clinician who has a patient with drug-resistant seizures, our pamphlets and guides help explain brain surgery to stop them. We also provide templates of letters for school, letters of medical necessity, and other key publications to help clinicians help parents find the resources they need after surgery. If families want to connect with other parents, we help clinicians find the right family to talk to.
For the educator who has a child who’s had brain surgery to stop seizures, our teacher’s portal links them with pertinent research, helpful guides, and other important information to support their critical work.
For the physical, occupational, speech, or other aligned therapist helping a child after brain surgery to stop seizures, our videos, guides, paradigms, and lists of relevant research and resources help these aligned professionals treat their patients.
Finally, by initiating new research and through our patient registry, we help researchers focus their efforts on the functional implications of the various epilepsy surgeries.