As Your Child Grows
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The journey of raising a child with hydrocephalus may be challenging and we’re committed to providing information to help you make the best decisions, advocate for your child, and connect with other parents.
What You Need to Know
Essential Guide: Developmental Milestones in Hydrocephalus
Discover key tips for tracking developmental milestones in kids with hydrocephalus. Learn how to support their growth with expert advice and resources.
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 caregivers understand hydrocephalus in order to provide optimal primary health care to these children and their families.
Social Skills Development in Children with Hydrocephalus
As the first generation of children treated for hydrocephalus mature into adulthood, it has become apparent that some of them will have difficulty developing their social skills. This article talks about those difficulties and suggests tools for overcoming them.
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.
Sending your Child to Daycare
Sending off a child to daycare is scary on its own. Doing so with a child with hydrocephalus can be even more difficult to handle. We have developed a checklist to help you prepare.
Easily Explain Hydrocephalus to a Child with Confidence
Learn how to explain hydrocephalus to a child in simple terms. With support from doctors, family, and friends, kids can live happy and fulfilling lives.
Growing Up With Confidence
As your child becomes more curious about their hydrocephalus, My Hydro Bear can help them learn in a way that feels safe and familiar. This cuddly bear has a shunt just like many kids do, making it easier to talk about treatment, answer new questions, and encourage independence.
You can order My Hydro Bear to support your child’s learning and emotional growth.
Track Symptoms and Manage Your Child’s Care with HydroAssist®
As your child grows, keeping important information organized can help you feel more prepared and confident.
HydroAssist® allows you to:
- Track symptoms like headaches, fatigue, and behavior changes
- Record treatment history, including setting changes and surgeries
- Store scans and important medical documents
- Monitor patterns over time
- Export and share information with your child’s care team
A simple way to keep everything in one place and support more informed conversations with your providers.
Build Resilience with RAISE
RAISE, the Hydrocephalus Association's Resilience Program, supports families in navigating the emotional side of hydrocephalus while building confidence over time.
Through RAISE, families can:
- Learn strategies to manage stress and uncertainty
- Build resilience and coping skills
- Strengthen confidence in daily life and decision-making
Support goes beyond medical care—RAISE focuses on helping families adjust, adapt, and move forward.
Hydrocephalus and it’s Impact on Cognitive Development and Education
This presentation will explore how hydrocephalus impacts the brain and its ability to process and hold information. Dr. Zabel will identify the learning challenges most commonly confronted by children with hydrocephalus at various ages and stages of their education. This session will also highlight school-based intervention/accommodation techniques that can often be effective in addressing these problems.
For your Child or as an Adult with Hydrocephalus: Is your Legal House In Order?
This webinar will discuss the broad range of estate-related legal documents, including wills, revocable living trusts, supplemental needs trusts, beneficiary designations, powers of attorney for property and health care, and living wills. It will consider their use both for adult individuals with hydrocephalus and for parents and other family members of individuals with hydrocephalus, with a particular focus on desired documents when an individual reaches the age of majority and becomes an adult.