Hydrocephalus Booklets & Fact Sheets

All of the booklets and fact sheets published by the Association are available here for you to download. If you are unable to open the PDF files from the links provided below, we will be happy to mail them to you. Please email your request to info@hydroassoc.org.

To download a PDF of our Publications Order Form, please click here.

If you are experiencing difficulty downloading any of our information, please contact us at info@hydroassoc.org to request an emailed copy.



Booklets

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Fact Sheets

 

The Hydrocephalus Association publishes information sheets on the following subjects and all are available in a printable format to be downloaded.

Shunt Systems for the Management of Hydrocephalus

This fact sheet provides an overview of how shunts treat hydrocephalus. It explains the basic components of the shunt, how shunts function and manage hydrocephalus, and what complications may arise with the shunt.

Ideal for: everyone

Endoscopic Third Ventriculostomy
Endoscopic third ventriculostomy (ETV) is a It is an alternative method to inserting a shunt for the management of Hydrocephalus. In this procedure, a perforation is made in the third ventricle, allowing CSF to flow out of the blocked system into a normal CSF space. It requires only a small hole in the skull (no brain exposure), but comes with its own set of potential complications. This fact sheet describes what ETV is, its successes and failures, potential complications, and who is a candidate for ETV.

Ideal for: everyone


Primary Care Needs of Children with Hydrocephalus
Children with hydrocephalus may have life-long special health care needs that can impact their primary care. It is important that care-givers understand hydrocephalus in order to provide optimal primary health care to these children and their families.

This fact sheet summarizes the most important needs to keep in mind when caring for children with hydrocephalus: knowing the symptoms of hydrocephalus, problems associated with hydrocephalus (including intellectual, ocular, motor disabilities and seizures), and primary care management (growth and development, immunizations, and screening tests for vision, hearing and dental), as well as the importance of family and clear communication.

Ideal for: parents of infants/children with hydrocephalus

Headaches and Hydrocephalus
It is not uncommon for people with hydrocephalus to experience headaches. This Information Sheet will discuss headaches and hydrocephalus in an attempt to give a better understanding of the issues.

Ideal for: everyone

Eye Problems Associated with Hydrocephalus

Some people with hydrocephalus develop eye problems. It is important to have a baseline eye examination because some eye problems may only be identifiable by such an exam. Sometimes the appearance of the optic nerve can help a neurologist and neurosurgeon know the severity of hydrocephalus.

This fact sheet lists eyes signs of hydrocephalus and what an ophthalmologist looks for in hydrocephalus. It describes how hydrocephalus injures the eyes, affects eye movements, and causes perceptual defects.

Ideal for: parents of children with hydrocephalus, particularly with school aged children


Hospitalization Tips
Hospitalization can be difficult for anyone; it can also be trying for the parents and family that must watch their loved ones go through such an experience. This fact sheet provides general suggestions for all patients and families, as well as tailored advice for various age groups: adults, adolescents, and parents of infants, young children, and school-age children.

Ideal for: everyone

How to be an Assertive Member of Treatment Team

People with hydrocephalus and their care-givers are highly encouraged to become active, assertive members of a healthcare team. This fact sheet lists 12 tips on how to best fill your role on such a team.

Ideal for: everyone

Second Opinions
Even though second opinions are a common and accepted practice in medicine, many people feel uncomfortable asking for them. This fact sheet is meant to empower you to do what is best for you, or your family member with hydrocephalus.

Ideal for: everyone

Durable Power of Attorney for Health Care

A Durable Power of Attorney for Health Care (DPAHC) gives the person, or persons, you designate as your agent the power to make health care decisions for you in the event you are unable to do so. For people with hydrocephalus over 18, a DPAHC can be a critical tool to assist with independent living and to insure continuation of appropriate medical care. This article explains DPAHC in further detail and provides a sample form.

Ideal for: people with hydrocephalus over 18 and their families and care-givers


Social Skills Development in Children with Hydrocephalus

As the first generation of children shunted for hydrocephalus mature into adulthood, it has become apparent that some of them will have difficulty developing their social skills. This information sheet talks about those difficulties and suggests tools for overcoming them.

Ideal for: parents of infants/children with hydrocephalus.

Learning Disabilities in Children with Hydrocephalus

Learning difficulties are not uncommon in children with hydrocephalus. It is important that parents be aware that their child may be at risk for learning disabilities and be prepared to take early action to assure their child the best social and academic start.

Ideal for: parents of infants/children with hydrocephalus.

Nonverbal Learning Disorder Syndrome (NLDS)
It is not uncommon for children with hydrocephalus to have learning disabilities. Nonverbal Learning Disorder Syndrome is a specific type of learning disability that has been identified in children with hydrocephalus.

Ideal for: parents of infants/children with hydrocephalus.

Individualized Education Programs: Communication Skills for Parents
Parents often need guidelines for communicating effectively with professionals to insure the best programs for their children. This fact sheet provides information on developing and maintaining good communication between parents and school personnel to aid parents in becoming more effective advocates for their child.

Ideal for: parents of school aged children with hydrocephalus

College and Hydrocephalus
This fact sheet is written for teenagers with hydrocephalus who are preparing for college. Important issues to consider including, location of the college, special services offered, and being well-informed about your medical information and equipped with documents. Once you are at college, new issues arise: becoming familiar with the student health center, deciding who to tell about your hydrocephalus, communicating with your parents and peers, headaches, alcohol and of course academics. A note to parents is included.

Ideal for: teenagers with hydrocephalus (and their parents)

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