Reflux is sometimes very easy to diagnose. If a baby consistently spits up a very large portion of what they are fed and has trouble gaining weight, there is little question that reflux is an issue. The only question in this case is whether some other condition such as a hiatal hernia is causing the reflux.
Unfortunately, reflux is often much more difficult to diagnose and monitor, particularly in older children. The list of things that can provoke a bout of vomiting of upset stomach ranges from food poisoning to bladder infections to math tests. The key to diagnosing reflux is often the frequency and severity of the symptoms combined with the inability to find another cause.
There are no set criteria for the diagnosis of reflux. A child is typically given a diagnosis of gastroesophageal reflux only when the number of reflux incidents is excessive and puts the child at risk for medical complications. A diagnosis of gastroesophageal reflux disease is usually given when some measurable physical damage has already occurred as a result of the reflux. See chapter 1 for a more thorough description of physiologic and pathologic reflux and reflux disease.
As you can see from these distinctions, there is a lot of room for disagreement about a diagnosis of reflux. When does one call the frequency of reflux event excessive? Each doctor may draw that line in a different place and it may vary a bit from patient to patient. Each professional may also have a slightly different opinion of the damage necessary before they propose a diagnosis of reflux disease. We use the term “fuzzy diagnosis” to describe the lack of clear cut criteria.
To further complicate matters, a child may only have occasional reflux events but those events can still cause damage. For instance, a child may experience excruciating and incapacitating pain from a single episode of acid backwashing into the esophagus. It is conceivable that a child who only refluxes once a month could still end up with an asthma attack or a sinus infection monthly. For this child any reflux episode is unacceptable. A few children who reflux at night may sleep so deeply that they do not swallow the acid and it pools in their esophagus or mouth. It doesn’t take very many episodes of this prolonged acid exposure to do damage to the mucosa or teeth. Conversely, some children reflux constantly with no ill effects.
The tests for reflux can be a tricky to perform and some are very traumatic for some children. This means that many doctors are reluctant to do tests unless they will give information that can’t be gathered any other way or will help clarify a confusing case of suspected reflux.
For all of the above reasons, diagnosing reflux is very subjective. It can be based on reports of symptoms given by parents, based on whether a trial of medication proves helpful or it can based on test that rule out other conditions or prove the presence of reflux. Often it is based on a combination of these methods.
Diagnosis based on detailed history
As stated above, a diagnosis of reflux can be safely assumed if a baby has a history of spitting up or vomiting since birth and it is starting to cause problems. It can not be diagnosed based simply on the witnessing of a single event or even a bad week with lots of spitting up but can be assumed if the pattern is present for a few weeks. Occasionally a child will be diagnosed shortly after birth if the child has an older sibling with reflux.
This is called a presumptive diagnosis and is perfectly valid. Doctors with lots of experience treating a child with reflux could probably make a presumptive diagnosis after talking to a parent over the phone if there were absolutely no reason to suspect a more serious reason for the symptoms. Most likely, however, they would want to examine the baby to double check for other symptoms that the parents might not have noticed.
An older child may be diagnosed with reflux based on a suspicious medical history and parents reports of subtle symptoms. For instance, a child with a history of ear infections may not be suspected of having reflux until the ear infections have been an issue for many months. Only then will most doctors start asking the parents questions about bad breath, night waking, or poor eating habits. The situation is better than in past years when a doctor would only be suspicious or reflux if a baby had pneumonia more than once - a dangerous level of reflux.
Parent input may be very valuable in identifying possible triggers for reflux. For example if the frequency or severity of reflux episodes tends to vary significantly from day to day or week to week, the parents and doctors may be suspicious of some triggering factor.
Parents and doctors may find it worthwhile to have a record of everything the child eats along with notes about the frequency and severity of reflux symptoms, what activities are taking and bowel movement patterns. Sometimes this will lead to the conclusion that a certain food seems to be associated with worsening symptoms or that the child may be experiencing constipation which can aggravate reflux.
By keeping careful records, you may discover things which aggravate the reflux but few parents find any clear cut cause. Avoiding the triggers may may the symptoms much better but may not make them go away. Unfortunately, there are often multiple aggravating factors and it can be difficult or impossible to isolate any individual factor. In the case of babies with reflux, you many not be able to clearly see any identifying factors until the reflux has almost gone away.
Diagnosis by trial of treatment
In cases where a child has definite but not blatant signs of reflux, the doctor may not be quite ready to give a diagnosis of reflux until a short course of treatment is attempted. This type of treatment is called empirical treatment. If the child responds well to the treatment, a diagnosis of reflux can reasonably be assumed. If the child doesn’t respond reasonably well to treatment, a stronger treatment may be tried or the doctor may elect to do tests. Further information about all the different treatments for reflux are in Chapter 3.
Testing for reflux and related disorders
Tests that may be used to evaluate your child are not all exclusively used to diagnose reflux. They may be tests to rule out other disorders that look very similar to reflux or that have reflux as a symptom.
Before scheduling any test
Don’t conduct tests that will only tell you something you already know. If, for instance, a child wakes up with bad breath, a sore throat and wheezing after going to bed with a stomach full of spaghetti sauce, it does not take a piece of high tech equipment to tell you what the problem is. Tests are expensive and there is always a small amount of risk. And no child should be subjected to them without first carefully considering whether they are likely to add valuable information and whether that information is likely to change the treatment planned.
If you and your doctor decide that a particular test will shed light on a confusing situation, please take the time to do some homework before scheduling the test. We strongly urge you to get VERY detailed instructions from the test facility. Find out exactly what is required of you and your child before and during the test. If your child is not allowed to eat before the test, then you will want to schedule it for early in the day. If your child would be better off asleep during the test, you might want to do your scheduling with optimal nap time in mind. Contact other parents on our discussion board who have been through the same test - preferably at the same facility. If you are prepared, you are less likely to have any unpleasant surprises.
Be sure that the technicians doing the test are experienced at dealing with children and work well with them. People who are good with children can make the difference between a traumatized child and one who finds the experience yucky but tolerable and forgets it quickly.
If your child is old enough to understand what is going on, you may want to use an anatomical dolls that will help you explain any tests and procedures to your child. Your child life specialist should have one and should be able to do all of the explaining. Child friendly hospitals will let you come in early and look at the room and machines.
Toddlers and preschoolers are particularly vulnerable to being severely traumatized by testing but are also too young to understand the tests or believe that the trauma is outweighed by some benefit. If your child feel your child is likely to have a bad experience, you may find it helpful to speak with the child life specialist who is trained to understand the child’s point of view and has many tricks for helping children cope with medical situations.
Have all the paperwork, blood work, height and weight, etc. done ahead of time so that you will be able to devote your undivided attention to distracting or comforting your child. Do not let yourself be drawn into conversations with technicians and doctors.
Specialist who study children’s pain have developed some wonderful ways of helping children cope with traumatic or painful procedures. Unfortunately, their expertise is used mainly by specialists who treat children with cancer who are tortured routinely and largely ignored by specialists who only perform an isolated test or two on each child. Technicians and doctors can sometimes forget that a test that is painless can still be very traumatic.
We will be developing separate pages on the various tests. Meanwhile, you can speak with any PAGER volunteer about the tests.