Visits To The Doctor:
A Guide For Parents
Introduction
When
a parent seeks medical care for a child, the world of physicians, nurses,
specialists, and technicians can seem confusing and complicated. This booklet
provides parents with suggestions for working with medical professionals
in order to get good care for their child.
Each child has unique medical needs. Some children with disabilities need to see many professionals and receive specialized medical care. This booklet provides information for parents of children with disabilities, but its message is for all parents: there are ways to develop a good doctor-patient-parent relationship that can benefit all concerned.
Although this booklet discusses doctors and physicians, the suggestions can help in developing better relationships with all health care professionals — therapists, nurses, dentists, and others.
Communication
No
one knows your child as well as you. Your description of your child's health
will aid the doctor and others in planning treatment in an atmosphere of
harmony and respect among the adults in your child's life.
It is important for parents to be candid and clear about the information they bring to the doctor. But, sometimes your concerns may be difficult to explain. You may just have a feelingthat something is wrong. These feelings are important and should be shared with the doctor.
Encourage your child to participate in conversations and discussions with the doctor whenever possible. As your child grows older, he or she can more fully participate. Teenagers need a sense of control over their lives. By encouraging them to take an active role in discussions with the doctor, they will develop skills to use as an adult.
Every medical encounter, regardless of how brief, will make an impression on your child. Some fear may be associated with medical procedures. You can give your child valuable support and encouragement with just a few words of praise and as much information as he or she can understand.
Your Primary Care Provider
Have One Person To Turn To First
It is important
to have one health care professional who knows your child really well. This
professional, your primary care provider, may be a local pediatrician, family
doctor, or in the case of an adult, an internist. The primary care provider
may also be a resident, intern, nurse, or other staff member at a clinic.
The primary care provider has two functions. One is to be the person you turn to first when you have concerns about your child's health or development. The other is to help you coordinate your child's health care by referring you to clinics or specialists, and by helping you understand their findings.
Choosing A Primary Care Provider
Often people choose
their child's doctor before the child is born. A pediatrician may be recommended
by a friend or an obstetrician. But sometimes parents need or want to find
a new primary care provider.
Begin your search for a primary care provider by thinking about what you need most from a health care professional. You may, for example, want to find someone who is easy to talk to or who has a particular interest in your child's health care needs. Ask your friends and neighbors what local doctors have the qualities that are important to you. You may want to ask the members of a parent support group or an organization serving children with disabilities to make a recommendation based on the experiences of other parents. See the list at the end of this book for some ideas.
On your first visit to doctors and other professionals, observe their reaction to you and your child. Do they make eye contact with your child? Talk directly to your child? Treat your child with concern and respect? Do they seem to really hear what you have to say? To acknowledge your feelings? To be interested in your questions? When you meet a professional who responds in these ways, you may have found the right primary care provider for your child.
Your Relationship With Your Child's Doctor
You are
the primary nurturer, monitor, coordinator, record- keeper, and decision-maker
for your child. You have the responsibility to understand diagnoses and
treatment recommendations for your child. An atmosphere of partnership and
mutual respect will enable you and the doctor to plan the best possible
care for your child. Trust yourself, as well as the doctor.
When you have chosen a primary care provider, be sure that the doctor or professional knows you want him/her to take on this role. He/she will then be far more effective in responding to your concerns and coordinating your visits to specialists. Many parents have found it helps to establish an understanding on several key issues early in the relationship with a primary care provider. For example, it helps to agree on what constitutes an emergency and what you should do if one occurs.
Think of your primary care provider as someone with whom you can talk. Feel free to talk about growth and development as well as medical issues. Talk about your child's progress as well as his or her problems. The primary care provider will respond to your child as a whole person if you share the news of your child's achievements, like learning to crawl or bringing home a good report card. This information can also be helpful in assessing your child's developmental progress. Tell the primary care provider about your fears and anxieties and about any changes in your family that might affect your child. Ask if you can make appointments just to talk at times when you have serious concerns about your child, and ask about fees for such consultations.
Remember that doctors are people and they too have feelings. When they have to present sad news, they likely feel your pain. They experience their own pain and frustration when they encounter children with conditions they cannot cure. Sometimes, when doctors present sad news, they may express their own emotions.
Consultations And Second Opinions
Your primary care
physician may recommend a second opinion to help establish a diagnosis or
get advice from a specialist. You, as a parent, may also seek a second opinion.
Feel free to discuss this option with your primary care provider and get
names of specialists.
When seeking a second opinion, find out what you can about the new professional to ensure you will be getting the kind of care you want. On your first visit to a new doctor or clinic, be sure that you and the doctor have the same understanding of why you are making the visit. A surprising amount of confusion results when parents and doctors have different goals for visits.
Another important point to consider is that philosophies of care do differ. Investigate options with the physician or specialist to seek out the best choice for your child.
Changing Doctors
Finally, be aware that it may not
be possible for you to establish a good partnership with every doctor. It
is usually worthwhile to work on your relationship with your child's doctor.
But, if you have made an effort to communicate with a doctor and he/she
does not seem to hear your concerns, or does not respond to your child in
a manner comfortable to you, give serious consideration to changing doctors.
If you decide to select a new doctor, arrange to have your child's records transferred to him/her. But, remember that you may want to see your former doctor at some future time.
Making The Most Of Your Time With The
Doctor
You can make the most of your time with
your child's doctor by preparing for routine visits. Before the day of the
doctor's appointment, think through the things you want to discuss with
the doctor and write them down. This booklet's sections on asking questions
and on medical history may help you organize your thoughts. Ask the nurse
or receptionist what procedures the doctor will do and, if these procedures
frighten your child, let the doctor know so you can work together to prepare
your child in the best possible manner. If you have other children, plan
to leave them home, if possible, or to bring another adult along to help
watch them. Take some small toys or books to entertain your child during
the visit.
Getting Ready
The following checklist may help you
get organized for your next visit to the doctor's office. Look it over the
day before your next appointment.
Asking Questions
You may be given a lot of information
by doctors and others. You may also have a lot of questions about that information.
You always have the right to ask questions.
To be sure you will have an opportunity to ask the questions that are most important to you, organize your thoughts before you get to the doctor's office. A parent group made the following suggestions. First, identify your concerns. Do you have any specific worries? Is there something you and your child simply need to understand better? Next, keep a running list of questions that occur to you between doctor's appointments. (You may want to use the blank pages at the end of this booklet or a small notebook for this purpose.) Finally, make a list of any questions your child may have. This is a good way to reinforce your child's role in his/her health care.
After you and your child have identified and written down your concerns, consider them in order of importance. You will usually have a limited amount of time for questions, so it may help to say, "Doctor, I have several things I am really concerned about today. I have some other questions too, if you have time." Make sure you understand the doctor's answer. Feel free to write down what the doctor says and ask him/her to repeat the answer, if necessary. If you have to leave with some of your questions unanswered, ask when it would be convenient for you to call and ask the remaining questions.
The following two pages offer a list of concerns parents often have. It may help you organize your concerns. You also may have concerns that do not appear on this list.
Diagnosis
Growth and Development
Medications
Tests
Referral to a Specialist or Clinic
Surgery
Hospitalization
Sometimes questions come up after you leave the office. It can take time
for you to absorb what the doctor or nurse has said. Calling back later
or the next day can clear up questions or problems. It's best to ask if
you feel confused.
Your Child In The Hospital
Hospital stays can be emotionally exhausting for both you and
your child — especially when your child is admitted in an emergency.
Planned hospitalizations produce plenty of tension too. You can reduce this
tension by preparing yourself and your child in advance.
Many hospitals have developed programs and materials to prepare parents and children. Ask your doctor for information or check with the hospital's Social Service or Pediatrics Department.
Try to arrange for a tour of the hospital before your child is admitted. Ask your tour guide where to park and eat and where you can stay overnight. Hospitals usually encourage visits by parents and others. Your child will need your emotional support, and if you are there, you will be more involved in decisions concerning your child.
Also, be sure you know what doctor will be assuming primary responsibility for your child's care during the hospital stay. Sometimes your own primary care physician will be in charge; sometimes another physician associated with the hospital. Find out when it's best to talk with doctors and other hospital staff.
Your Child's Medical History
Your child may be seen by one or more specialists in addition
to your primary care provider. These doctors will often ask for a complete
medical history. We have included a medical record, which you may want to
complete and keep up-to-date for such appointments. You may want to keep
a file with this booklet and all your child's important papers which you
can refer to as your child progresses.
Continuing Support
This booklet is only a guide for working with medical professionals.
Your own experience and common sense will be equally important in ensuring
your child has good medical care. Other parents of children with disabilities
can be important sources of information and support. Look for groups or
individuals in your community. Start your own group or informal network.
Contact the statewide groups listed later in this booklet for assistance
or for a local contact.
Where Else Can You Turn?
Be aware that physicians need not — and probably should
not — be the sole source of help and support for you and your child.
Your child may need nonmedical services, perhaps special education, physical
therapy, or counseling. Some of these services are available through school
districts and others through community agencies like Easter Seal Societies,
United Cerebral Palsy affiliates, local Arc's, Learning Disabilities Associations,
or Epilepsy Associations.
Always remember that as difficult and unique as your situation may be, you are not alone. Support groups for parents of children with disabilities have formed in many parts of the state. Many parents across the country have written books and articles about their experiences. Your physician may be able to help you find services, support groups, and books. Other helpful resources are listed below.
ABC for Health
152 W. Johnson Street, Suite 206
Madison, WI 53703-2113
1-800-585-4222 (statewide)
Alliance for the Mentally Ill of Wisconsin, Inc.
1410 Northport Drive
Madison, WI 53704-2041
(608) 242-7223
(800) 236-2988
(608) 242-7225 (FAX)
Arc WI
121 S. Hancock Street
Madison, WI 53703
(608) 251-9272
(608) 251-1403 (FAX)
Autism Society of Wisconsin
519 N. Union Street
Appleton, WI 54911-5031
(414) 731-1448
(414) 731-4148 (FAX)
Brain Trauma Association of Wisconsin, Inc.
735 N. Water Street, Room 701
Milwaukee, WI 53202
(414) 271-7463
(414) 271-7166 (FAX)
Division of Vocational Rehabilitation
Bureau for Sensory Disabilities
1 W. Wilson Street, Room 950
Madison, WI 53707-7852
(608) 266-8081
(608) 266-8082 (TTY)
Down Syndrome Association of Wisconsin
P.O. Box 23384
Milwaukee, WI 53223
(414) 355-1404
Easter Seal Society of Wisconsin
101 Nob Hill Road
Madison, WI 53713
(608) 277-8288
(608) 277-8333 (FAX)
Governor's Committee for People with Disabilities
P.O. Box 7850
1 W. Wilson Street, Room 558
Madison, WI 53707-7850
(608) 266-5378
(608) 267-2082 (TTY)
(608) 267-0949 (FAX)
Human Services Information Center
317 Knutson Drive
Madison, WI 53704
(608) 266-1164
Learning Disabilities Association of Wisconsin
15738 W. National Avenue
New Berlin, WI 53151
(414) 821-0855
Mothers United for Moral Support, Inc. (MUMS)
150 Custer Court
Green Bay, WI 54301
(414) 336-5333
National Spinal Cord Injury Association
Madison Area Chapter
P.O. Box 2685
Madison, WI 53701
(608) 222-8302Milwaukee Area Chapter
1545 S. Layton Boulevard, Room 516
Milwaukee, WI 53215
(414) 384-4022
Prader-Willi Syndrome Association of Wisconsin
305 Amanda Way
Verona, WI 53593
(608) 845-9597
Spina Bifida Association
Greater Fox Valley Chapter
529 S. Lake Street
Neenah, WI 54956
(414) 722-5456Northeast Chapter
2603 Elm Avenue
Sheboygan, WI 53081
(414) 682-5632Northern Chapter
317 E. Conrad Drive
Medford, WI 54451
(715) 748-4097Southeast Chapter
P.O. Box 303
Germantown, WI 53022
(414) 251-6613
Trace Center
1500 Highland Avenue
Madison, WI 53705
(608) 263-2237
(608) 262-8848 (FAX)
United Cerebral Palsy
201 Ceape Avenue, Room 108
P.O. Box 1241
Oshkosh, WI 54902-1241
1-800-261-1895 (statewide)
Waisman Center, UW - Madison
1500 Highland Avenue
Madison, WI 53705
(608) 263-5815 (Clinical Services Intake)
Wisconsin Association of the Deaf
P.O. Box 11
Madison, WI 53711
(414) 992-5386
Wisconsin Coalition for Advocacy, Inc.
16 N. Carroll Street, Suite 400
Madison, WI 53703
(608) 267-0214
(608) 267-0368 (TTY & FAX)
Wisconsin Council for Persons with Physical Disabilities
1 W. Wilson Street, Room 472
Madison, WI 53707-7851
(608) 267-9582
(608) 267-9880 (TTY)
(608) 267-2913 (FAX)
Wisconsin Council on Children and Families
16 N. Carroll Street, Suite 420
Madison, WI 53703
(608) 284-0580
(608) 284-0583 (FAX)
Wisconsin Council on Developmental Disabilities
722 Williamson Street
P.O. Box 7851
Madison, WI 53707-7851
(608) 266-7826
(608) 266-6660 (TTY)
(608) 267-3906 (FAX)
Wisconsin Department of Public Instruction
Division for Learning Support and Equity Advocacy
125 S. Webster Street
P.O. Box 7841
Madison, WI 53707-7841
(608) 266-1781
(608) 267-1052 (FAX)
Wisconsin Epilepsy Association
6400 Gisholt Road, Suite 113
Madison, WI 53713
(608) 221-1210
Wisconsin Family Ties
16 N. Carroll Street., Suite 705
Madison, WI 53703
(608) 267-6888
1-800-422-7145 (statewide)
Wisconsin First Step
Lutheran Hospital - La Crosse
910 S. Avenue
La Crosse, WI 54601-9980
1-800-642-7837 (statewide)
1-800-282-1663 (TTY)
Revised April 1996
Cumulative Medical and Educational Record
Child's Name______________________________________________ Sex________
Date of Birth______________________________________________
Parent's Name_____________________________________________
Parent's Name_____________________________________________
Other Children (Include Sex and Date of Birth)
__________________________________________________________
__________________________________________________________
__________________________________________________________
__________________________________________________________
Child's Primary Care Physician_________________________________
Address____________________________________________________
Telephone Number___________________________________________
Specialists, Clinics or Other Physicians Consulted (Include Dates)
___________________________________________________________
___________________________________________________________
___________________________________________________________
___________________________________________________________
___________________________________________________________
Biological Family History
Is there any family history of medical, psychological or learning difficulties?
(i.e., allergies, respiratory problems, heart disease, epilepsy or neurological
problems, cerebral palsy, cognitive disability, diabetes or other endocrine
disease, etc.) If so, please describe, noting family member's relationship
to child.
___________________________________________________________
___________________________________________________________
___________________________________________________________
___________________________________________________________
___________________________________________________________
___________________________________________________________
___________________________________________________________
___________________________________________________________
___________________________________________________________
Pediatric History
Prenatal (Before Birth)
No___________ Yes___________ If yes, starting in what month?___________
If yes, describe______________________________________________________
___________________________________________________________________
If yes, when?___________ What kind?___________________________________
If yes, what?________________________________________________________
Natal (Birth)
If yes, what?_____________________________________________________
_______________________________________________________________
__________________________________________________________________________
Neonatal (After Birth)
Developmental History
How old was the child when the following first occurred:
3 months_______________________________________
6 months_______________________________________
1 year_________________________________________
2 years________________________________________
3 years________________________________________
4 years________________________________________
Medical History
A. Communicable Diseases - Has your child had any of the following, yes or no? (include date if yes)
B. Allergies - Is your child allergic to: Yes or No?
Name(s)________________________________
_______________________________________
_______________________________________
Name(s)________________________________
_______________________________________
_______________________________________
Name(s)________________________________
_______________________________________
_______________________________________
C. Immunizations - List the dates received:
D. Medications - Does your child take, yes or no?
List other medications (Include Dates & Physician):
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________
E. Medical Interventions
List below in chronological order, including dates, reasons, age, where, & physician
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________
Educational History
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________
For additional copies or for further information contact:
Wisconsin Council on Developmental Disabilities
600 Williamson Street
P.O. Box 7851
Madison, Wisconsin 53707-7851
Voice: (608) 266-7826
TTY: (608) 266-6660
FAX: (608) 267-3906
Document Source: http://WWW.Waisman.Wisc.Edu/earlyint/wcdd/drvisit.html