DESCRIPTION
Hydrocephalus is a major cause of disease and affects 85 out of 100,000 people worldwide.
The brain and spinal cord are surrounded by cerebrospinal fluid (CSF). This clear fluid protects the brain. CSF is constantly produced by a group of blood vessels. This group is called the choroid plexus. The fluid flows around the brain and spinal cord. It is then absorbed into the blood.
Four open spaces (ventricles) in the brain communicate with each other. They ensure proper CSF flow. If the flow of CSF is blocked, fluid will build up. This increases brain pressure.
Non-communicating hydrocephalus occurs when the flow is blocked before it exits the ventricles. Communicating hydrocephalus occurs when the flow of CSF is blocked after it exits the ventricles.
CAUSES
Congenital hydrocephalus is usually due to structural differences of the brain. These block normal flow of CSF. It can be caused by:
- Genetic disorders associated with birth defects
- Infection during pregnancy
- Complications from birth
Acquired hydrocephalus may be caused by:
- Brain tumors
- Infections that affect the central nervous system
- Trauma
- Strokes that cause bleeding in the brain
LABORATORY INVESTIGATIONS
Early diagnosis is key in preventing neurologic injury. To diagnose hydrocephalus, a doctor will use:
- A complete health history
- A physical exam
Other studies that can aid in diagnosis include:
Funduscopic exam.
Ultrasound.
Magnetic resonance imaging (MRI).
Computed tomography (CT).
Limited (fast or quick-brain) MRI.
Lumbar puncture.
Genetic testing.
Resources
The Hydrocephalus Association’s mission is to find a cure for hydrocephalus and improve the lives of those impacted by the condition. Their vision is a world without hydrocephalus. The Hydrocephalus Association’s Community Networks, also known as support groups, provide localized support, education, and empowerment through the community. The network hosts educational events, support group meetings, and other gatherings that enable individuals and families to connect.
Pediatric Hydrocephalus Foundation
The mission of the Pediatric Hydrocephalus Foundation (PHF) is to educate the community by raising the level of awareness about this brain condition. PHF provides support to the families, friends, and children who are diagnosed with hydrocephalus. Working with medical professionals, and policy makers at the state and federal level, PHF advocates on behalf of the hydrocephalus community to push for more research, treatments, and search for a cure for hydrocephalus. Over half of the states in U.S. have PHF Facebook chapter groups. The list can be found on the PHF website.
Pediatric Epilepsy Surgery Alliance
The Pediatric Epilepsy Surgery Alliance (formerly known as The Brain Recovery Project) enhances the lives of children who need neurosurgery to treat medication-resistant epilepsy. They empower families with research, support services, and impactful programs before, during, and after surgery. PESA’s programs include research-based, reliable information to help parents and caregivers understand when a child’s seizures are drug-resistant; the risks and dangers of seizures; the pros and cons of the various neurosurgeries to treat epilepsy; the medical, cognitive, and behavioral challenges a child may have throughout life; school, financial aid, and life care issues. PESA’s resources include a comprehensive website with downloadable guides, pre-recorded webinars, and virtual workshops; an informative YouTube channel with comprehensive information about epilepsy surgery and its effects; a private Facebook group (Education After Pediatric Epilepsy Surgery) with over 300 members; Power Hour (bi-monthly open forums and live virtual workshops on various topics); and free school training to help your child’s education team understand the impact of their epilepsy surgery in school. Their Peer Support Program will connect you with a parent who has been there. The Pediatric Epilepsy Surgery Alliance also hosts biennial family conferences and regional events that allow families to learn from experts, connect with other families, and form lifelong friendships. They also provide a travel scholarship of up to $1,000 to families in need to fund travel to a level 4 epilepsy center for a surgical evaluation.
In addition, PESA has resources for medical professionals to assist in helping clinicians help the parents of their patients find the resources they need after surgery. Educators and therapists will also find helpful resources and information, including videos, guides, and relevant research. Patients who have undergone surgery are encouraged to register with the Global Pediatric Epilepsy Surgery Registry to help set future research priorities.
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