Get Help in New Mexico
Responding to a Diagnosis
On this Page
When you have a child whose development is delayed or who has chronic
medical problems, not knowing the cause or not having a diagnosis can be
frustrating. Once your child has a diagnosis, there will be new feelings to deal
with, as well as new experiences for parents and other family members. This page
aims to help parents and families with that process.
Within the Medical Home and the Portal
While the Medical Home Portal is not designed to help with making a
diagnosis, it does offer resources for the steps that come after learning your
child’s diagnosis. Your child’s primary care doctor or medical home provider should
be the best resource for helping to determine your child’s diagnosis. See
Screening Tests and the Diagnostic Process for more information.
Reactions to and Coping with Diagnosis: An Overview
The evaluation for a suspected chronic health condition is often very hard
for parents and family members. It may take weeks or months of testing and
evaluations by subspecialists before a diagnosis is made. When a diagnosis is made,
parents and family members may often feel shock and disbelief. In some cases, a
formal diagnosis is still not identified.
Most doctors make every attempt to give sensitive diagnoses in a
compassionate way, but sometimes the way they communicate may lead to parents
misunderstanding a child’s condition or not understanding written materials given to
them. Parents should review information with their doctor or specialist to make sure
they understand potential complications or a prognosis (the likely course or
outcome). Parents may have questions about how to cope with their child’s diagnosis
on an emotional level. Sometimes the emotional impact of a child’s medical problems
can be very difficult for parents and family members.
Common Reactions
Though each child is unique and parents’ reactions will vary, some
common feelings after learning the diagnosis are anger, sadness, disappointment,
fear, denial, rejection, guilt, and sometimes even a feeling of complete lack of
control. No matter what emotions family members may have, it’s important to know
that those reactions are normal. Below are some things to keep in mind:
- Depending on their age, children may have many of these feelings. Remember to teach them that it is normal to have these feelings and it can be very helpful to talk about it or express themselves.
- Each family member may have a different reaction, which is why it’s important to be patient and understanding with spouses, siblings, grandparents, and others.
- Single parents may find it hard to wade through the emotions surrounding the diagnosis process alone, but it’s important to know that support is available.
- Siblings of a child with a chronic or terminal illness often have many of the same reactions as parents. Siblings have a special bond with one another and when one isn’t well, the other(s) may be deeply concerned. Siblings may also experience a kind of loss when they realize the thoughts they have about life with their sibling will have to give way to new ideas.
- Talking about reactions and experiences with support groups or professionals can be very helpful, not only for parents, but also for siblings, and even extended family members. The first step in accepting a diagnosis in the family is learning that parents and family members are not alone in their experiences. The next step is learning how to cope and thrive.
Coping and Thriving
Good mental coping skills may sound simple, but when faced with a
tough diagnosis it can be easy to forget these everyday tools, such as using
your imagination and looking for the humor in difficult or upsetting situations.
Although life has changed and taken an unexpected direction, there are still
good outcomes to be expected for you and your child. Approach problems head on,
and realize that sometimes you may have the answer but, if you don’t, it’s never
a bad idea to seek out help.
For more information, go to Taking Care of Yourself and Your Family
The Relationship between You and Your Child’s Primary Care Doctor
The role of the primary care doctor for a child with special health care
needs is very important. It is necessary to form a working relationship with your
child’s doctor, as he will be responsible for providing health care, information
about your child’s diagnosis and treatments, coordinating the care provided by
others, and supporting you as parent and caregiver. Make sure you are comfortable
with your child’s primary care doctor as a medical expert and as someone you can
communicate with and trust. Building a medical home involves parents, doctors, and
other care providers working together on the child’s behalf.
It’s vital that you take an active role in your child’s health care. Ask
questions and make sure to stay informed about your child’s condition and treatment
options. It is a good idea to ask your child’s doctor about information you’ve read
about the diagnosis, treatments, and other related problems. Even the most committed
doctor faces difficulties in keeping up with the latest scientific and practical
information, especially about conditions that are rare. Give your doctor time to
review material you bring to her before expecting a big discussion. Your doctor and
other health care providers should welcome the information you share and appreciate
your willingness to help them help your child.
Resources for Medical Information
Much information about specific conditions and their care is offered in
the Medical Home Portal’s “Diagnoses and Conditions” section. Although that section
is written primarily for doctors, we hope that families will also use the
information found there. The menu of the diagnoses for which modules have been
developed can be viewed at Diagnoses & Conditions.
Corresponding Diagnoses & Conditions - FAQs are found in the Portal's For
Parents & Families section, and aim to provide an introduction to the condition
and answer several common questions.
In addition to the Medical Home Portal, the links
below can be trusted to offer high quality information.
-
MedlinePlus Understanding Medical Words
Information for families that includes description, frequency, causes, inheritance, other names, and additional resources; from the National Library of Medicine. -
MedlinePlus Medical Encyclopedia
Information for families that includes description, frequency, causes, inheritance, other names, and additional resources; from the National Library of Medicine. -
Healthy Children (AAP)
Offers information and advice about child development, health topics, safety and injury prevention, various medical conditions and educational issues, and parenting; American Academy of Pediatrics. -
National Organization of Rare Disorders (NORD)
Information for families that includes synonyms, signs & symptoms, causes, affected populations, related disorders, diagnosis, therapies (both standard and investigational), and support organizations; National Organization of Rare Disorders. -
KidsHealth
KidsHealth is the largest and most-visited site on the web, providing doctor-approved health information about children from before birth through adolescence. This site offers numerous easy-to-read articles on kids' health, written for parents, teens and kids. -
Genetic and Rare Diseases Information Center (GARD)
Includes information about symptoms, inheritance, diagnosis, finding a specialist, related diseases, and support organizations; Genetic and Rare Diseases Information Center of the National Center for Advancing Translational Sciences.
Where to Go from Here
Parents who have good information about their child's diagnosis and
condition are better able to actively participate in the medical home team, ensuring
that their child receives the best care possible. The Finding Quality Information page will help in
understanding how to find reliable information about how to move along with caring
for your child with special health care needs.