What You Need to Know

A major milestone in a young adult living with hydrocephalus is the transition from pediatric to adult medical care. Planning for transition is vital, but this process can be complex and overwhelming.

Transitioning from Pediatric to Adult Care

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*NOTE: We asked adults to share their experiences so that all of you can learn about the different things that you encounter through your journey.

As adolescents become young adults, they typically must leave the pediatric health care system for the adult health care system, a process called health care transition. They will have new physicians and practitioners in a setting that is very different from the pediatric system. Planning for transition is vital, but this process can be complex and overwhelming.

What You Need to Know

Timeline for a Successful Transition to Adult Care

Mapping out a path to taking over your medical care once you are of legal age and/or ready to move away from home will help you have a successful transition into the adult medical world.

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Toolkit for Transitioning Medical Care

What information do you take with you from your pediatric neurosurgeon to your new adult neurosurgeon? Working with both pediatric and adult providers, we have developed a tool for you to use to help ensure a smooth transition of care.

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Prescription Management: Helping Your Teen Master It

Prescription management is easier with routines, reminders, and safety tips, empowering your teen to take charge of their health with confidence.

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Empowering Your Child to Be Their Own Advocate: Navigating Healthcare with Confidence

Empowering your child to advocate in healthcare builds confidence, communication skills, and independence for navigating lifelong medical care.

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Transition of Care Webinar Series

Navigating Medical Transition: From Pediatric to Adult Care for Patients with Hydrocephalus and Spina Bifida

Transitioning from pediatric to adult medical care can be complex for individuals with hydrocephalus and spina bifida. This webinar offers insights on when to start, the role of doctors, essential tools, and managing common challenges, empowering patients and caregivers to navigate the process with confidence.

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Getting Ready for the Big Switch - Planning for the Transition from the Pediatric to the Adult Health Care System

As adolescents become young adults, they typically must leave the pediatric health care system for the adult health care system, a process called health care transition. They will have new physicians and practitioners in a setting that is very different from the pediatric system. Planning for transition is vital, but this process can be complex and overwhelming. This session will give an overview of the process and goals of transition, and the challenges and barriers associated with it. The speakers will review strategies to prepare teens, young adults, and parents for a successful transition. Issues that are specific to hydrocephalus and related health care problems will be covered.

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Moving from Pediatric to Adult Care Are you Ready?

Transitioning from pediatric to adult care can feel overwhelming, but planning ahead makes all the difference. In this video, experts share what to expect, key steps to take, and tips to help you feel prepared and confident as you move into adult care.

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Everybody with Hydrocephalus Needs Longitudinal Care

Many patients with hydrocephalus are told that they do not need to see a doctor unless “something bad happens,” but many physicians on the Hydrocephalus Association Medical Advisory Board think that this is bad advice and that patients should see their doctors periodically for assessment. In this video, Dr. Mark Hamilton and Dr. Michael Williams, leaders in the development of the longitudinal care model for patients with hydrocephalus, review reasons it is important to your care, what you should expect during a visit, and why this model needs to be disseminated more widely. This presentation was given at the Hydrocephalus Association 2018 National Conference on Hydrocephalus.

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HA Webinar

Moving from Pediatric to Adult Care: Are you Ready?

Turning 18 is a big deal for both teens and their parents. It’s that milestone birthday where a teen becomes a legal adult and in charge of many parts of their life, including their medical care. But life out in the adult healthcare world is really different than in the pediatric world. Join Dr. Brandon Rocque and Amanda Garzon, MA to see where your family stands on the checklist to your teen taking over their medical care so teens can move on and out (of the house) with confidence. Teens, bring your parent(s) and vice versa! This is meant to be an interactive discussion.

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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.

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HA Webinar
Dan Kricke

Aging Out of Pediatric Care: A Cautionary Tale

Four. That is how many different hospitals I visited trying to transition from a pediatric to an adult neurosurgery program in the midst of a shunt malfunction.

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HA’s Transition Initiative: Transitioning from Pediatric to Adult Care

A major milestone in a young adult living with hydrocephalus is the transition from pediatric to adult medical care. Learn about the HA Transition Initiative.

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