Learning to Navigate the Health Care System

Every pediatric patient needs to have a strong advocate for them.  Especially because they cannot always speak for themselves.  As a parent or guardian of a child with laryngomalacia, GI problems, or pediatric feeding disorders, you must learn the health care system quickly to help the patient.  I found it helpful once I understood the roles of each doctor and specialist.  Here is a list of the doctors you will need to get your child the care he needs.

1. General Pediatrician

   You may already have a primary care manager, or pediatrician for your child.  They are the doctors you go to for all check-ups, well-baby visits, and sick visits.  This person should be the most important person to you in the health care system because they will refer you to the specialists you need.  You need to make sure you feel comfortable talking openly with this doctor and they will listen to you.  When you have a child with more difficult medical issues, you need to have a pediatrician that will coordinate all the specialist, talk to each specialist, and make sure each specialist is on the same page as to diagnosis and treatment.  If you feel the specialists are not listening to you, or going against another specialist, you need to call your general pediatrician immediately to have them coordinate treatment plans.  Without a focused, caring general pediatrician, it will be impossible to navigate your way through the system successfully.




2. Otolaryngoligist (Ear, Nose, and Throat doctor)

   This doctor is important mostly for the patients suffering from laryngomalacia.  They will diagnosis the condition and at what severity it is.  They do this by placing a small camera at the end of a long, flexible wire into the nose, down the back of the throat.  I have had this done and it really doesn't hurt.  It is just uncomfortable.  From there the camera gives a birds eye image of the larynx and how the epiglottis is functioning.  Your infant or child will usually cry a lot during this procedure, but it is actually good because it helps the ENT doctor see how the epiglottis is functioning, with all the deep breaths from crying.  They will be able to see how much of the cartilage is obstructing the airway.  They will monitor how the condition improve or worsens.  ENT doctors are surgeons.  There is a procedure that can be used in some cases to correct the floppiness of the cartilage.  ENT would perform that surgery.  If the patient progresses to the point of needing a tracheostomy,  the ENT doctor will perform the surgery as well.

3. Gastroenterologist

   A G.I. doctor is one of the most important doctors to you on a daily basis.  They will monitor weight gain and reflux.  If the child's vomiting is too much to gain weight, they will recommend procedures and medicines.  The G.I. doctor may perform what is called an Endoscopy.  This is done while the child is sedated in the operating room.  They will use a scope to go into the airway, esophagus, stomach, and at time the first section of the small intestine called the duodenum.  They look at the condition of the tissues there, take very small samples of tissue to have analyzed in the laboratory, and make recommendations from there.  They will help find the correct feeds needed for you child and monitor a gastrostomy tube if the patient needs one.

4.  Pulmonologist

     A pulmonologist is a doctor for the lungs.  They also cover the larynx and the trachea.  Most often patients with laryngomalacia will not need a pulmonologist unless the child is aspirating. (Aspiration is when food or drink enters the trachea passed the epiglottis.)  Aspiration can cause a type of pneumonia called Aspiration Pneumonia.  It is very serious and must be avoided at all cost.  The pulmonologist, along with ENT will guide you and help you if this is the issue.

5.  Nutritionist

    A nutritionist stands with the G.I. doctor hand in hand.  Nutritionists also follow weight gain, food intake, and help find feeds that work for your child.  As they begin taking more nutrition by mouth, the nutritionist make sure they are getting the right varieties of food and the right calories daily to grow.

6.  Residents and Medical Students

     If you patronize a teaching hospital, which you probably do, you must know that many people will come into the office or hospital room and ask you the same questions over and over.  These are the Residents and Medical students.  Residents are doctors that have just graduated from medical school, but need specialized knowledge in the career path they are following.  Every doctor does four years of residency where they work under more mature, experienced doctors to learn.  Medical students are people in medical school.  They are not doctors, but are learning how to be one.  They must learn how to take a medical history, how to discover a diagnosis, and then come up with a treatment plan.  All of these people will ask you to repeat your child's medical history and the complaint at present.  Keep in mind you don't have to let them ask you questions to get your child care.  If you just want to have a solid, experienced doctor right at first, ask for one.  You have the right.   However, every doctor needs to learn.  They need the experience only your child can give them.  I suggest you let every medical student and resident examine your child.  Besides, they always relate everything to the more experienced doctors.  It is a good way to make sure the whole story is told and every question that needs to be ask has been.  It will help your child get better care in the end.