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Before a Diagnosis

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As children grow, parents generally see them reach milestones, learn new things, and develop. When there is a concern about the child’s development or health, the parents or caregivers will usually notice it first, and then the child should be examined or evaluated by a doctor as soon as possible. Evaluations and screening will be used to determine if there is an issue and also to rule out conditions. It is important for families to understand the screening and diagnostic process and that it is something the child’s primary care clinician can help them through these steps. Subtopic pages included under “Before a Diagnosis” are:

Identifying and Diagnosing Problems

Early identification of medical, developmental, sensory (vision or hearing), and mental health problems in children can allow early care and better results for those children and their families. Key roles of a child’s primary care team (his or her medical home) are listening to parents’ concerns, watching for signs or symptoms, and screening for problems that have yet to result in signs or symptoms.
When a problem is suspected because of parental worry or a screening test’s results, further testing, exam, visits with specialists, or even hospital stays may be the next steps.
Suspecting and then finding a developmental or medical health problem and its cause in a child is straightforward for some patients and families, but for others it may not be easy. The diagnosis could take a long time, and might need a lot of testing and experts’ views. For a few children, a diagnosis may not be found or may need to wait for new scientific discoveries.

Resources

Information & Support

For Parents and Patients

Find Your Family Voices
Family Voices is a national family-led organization of families and friends of children and youth with special health care needs (CYSHCN) and disabilities. There is a Family Voices in each State. These organizations provide one on one consultations, resource and referral, and parent education on special health care and disability issues.

Utah Parent Center
A nonprofit organization that provides training, information, referral, and assistance to parents of children and youth with all disabilities including physical, mental, hearing, vision, learning, behavioral, and emotional. Staff consists primarily of parents of children and youth with disabilities.

Find Your Parent Center
Parent Centers provide education and referrals for families with a child who has a disability, as well as the professionals who work with them. There are almost 100 Parent Training and Information Centers (PTIs) and Community Parent Resource Centers (CPRCs) in the US states and Territories; Center for Parent Information & Resources.

Learn the Signs. Act Early (CDC)
Offers many tools, videos, lists, learning materials, and an app to track a child’s developmental milestones (ages 2 months to 5 years) and act if concerned about progress; Centers for Disease Control and Prevention.

Services for Patients & Families in Utah (UT)

For services not listed above, browse our Services categories or search our database.

* number of provider listings may vary by how states categorize services, whether providers are listed by organization or individual, how services are organized in the state, and other factors; Nationwide (NW) providers are generally limited to web-based services, provider locator services, and organizations that serve children from across the nation.

Authors & Reviewers

Initial publication: January 2013; last update/revision: January 2022
Current Authors and Reviewers:
Author: Chuck Norlin, MD
Authoring history
2013: first version: Tina PerselsR
AAuthor; CAContributing Author; SASenior Author; RReviewer