Patient and Caregiver Handbook: Craniosynostosis
Learn more about craniosynostosis and surgical treatment for the condition.
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Mental Health and Congenital Heart Disease: A Review
Lyla El-Messidi Hampton, PhD, ABPP-CN, pediatric neuropsychologist and co-director of the Cardiac Kids Developmental Follow-up Program at CHOP, and Nicholas Seivert, PhD, psychologist in the Cardiac Center at CHOP, review the many reasons for increased mental health risk among children with heart defects, especially single ventricle patients, and provide information about: importance of early identification and intervention; ADHD meds for CHD patients; the higher rate of autism spectrum disorders in this population; the parental distress loop; screening in primary care, and red flags; places to refer at CHOP; and more.
Family TIES: Offering Support Through a Shared Experience
Family Connection Through Trust, Information, Empathy and Support (aka, Family TIES) is a program offered through the CHOP Neuroscience Center that connects families that have already experienced epilepsy surgery with current and prospective patients and their families.
Congenital Heart Initiative
While nearly 2 million adults in the United States are living with a congenital heart defect, it’s been historically hard to gather significant data on these conditions. That’s why the Heart Research Alliance, Adult Congenital Heart Association, University of California San Francisco and Children’s National Medical Center came together to develop the Congenital Heart Initiative, a patient registry for those with adult congenital heart disease (ACHD).
Neurosymptoms.org
A comprehensive source of information and education about Functional Neurological Disorder (FND), which offers written, video and podcast content for children, caregivers and health care providers, along with links to support groups. The site also has an app.
myFND app
This app from neurosymptoms.org helps with tracking symptoms of FND and supports communication with the user’s health care team.
FND Hope
This international patient- and caregiver-run organization has a website with educational information about symptoms and treatment. Other resources include search tools to find providers and peer support groups, as well as research updates, an events calendar and a webinar library.
NEUROkid
An educational site for children and caregivers who are living with non-epileptic events (PNEE, pseudoseizure and others). The explanatory content is extensive, as are the downloadable symptom management tools.
FND Action
A UK-based, patient-led charity focused on education and peer support. FND Action has educational materials including an FND toolkit. Other peer support groups based in the UK include FND Dimensions.
FND Australia
This Australia-based educational organization has printable Fact Sheets on its website that focus on education for families, the role of PT/OT in treating FND, and the role of psychology in understanding the mind-body connection.