GERD 101 for Teens and 'Tweens
The basics - a good explanation of reflux is important
Explaining reflux to teens can be very easy and very hard at the same time. About 50% of what you need to know is medical stuff and the other 50% is a matter of semantics. It is very tricky to describe reflux correctly because every doctor has a slightly different definition. They know it when they see it, but putting an accurate description on paper is another story. Unfortunately, it is very important to understand reflux because you guys are in charge of monitoring your symptoms and reporting to the doctor.
The definition of reflux that I like best is to just say that stomach acid and food are flowing back up toward the mouth and causing problems. This leaves everybody free to define "problems" however they choose. These problems range from bad breath to apnea (cessation of breathing) and cover quite a wide range of symptoms in between. The symptoms vary a lot from one patient to another. They can include pain (occasional and mild to chronic and debilitating), disinterest in food, a need to drink soothing liquids constantly, problems with maintaining a reasonable weight, a feeling of vomit that doesn't usually come all the way up, asthma, bronchitis, sinus infections, ear infections, hoarse voice, coughing (especially at night or on waking), waking at night, sore throat, salivating more than normal, damage to tooth enamel and neck rolling or arching.
What does reflux look like in kids?
Let's start with classic reflux. It doesn't really apply to teens because the typical child with reflux is a baby who spits up constantly and doesn't like to eat. There really isn't an accepted profile of a teen with reflux because just a few years ago doctor didn't believe that teens have reflux. If I had to guess, I would say that the typical teen has had symptoms since they were a baby but they were ignored or got better for a few years. We think that the hormone changes teens experience can spin reflux out of control.
How many kids have reflux?
There is only one reasonably good study that tried to estimate the number of kids with reflux. Dr. Suzanne Nelson has published her results in the Archives of Pediatric and Adolescent Medicine. (Back issues are online.) Basically, she went to doctors offices and asked the parent if their kids had three different symptoms of reflux. Then she asked the same questions of kids who were older than 10. The numbers vary a bit by question and age but it looks like about 3-5% of kids who are basically healthy have reflux. There are 80 million children under age 18 in the United States so doing the math leads us to conclude that at least a couple million kids have reflux.
This study excluded any children with other medical disorders or who happened to be ill. Many of you would have been disqualified from the study because you visit doctors more often when you are sick. Only kids who were in for check-ups qualified. Reflux is extremely common in premature babies, children with asthma, cystic fibrosis, muscular or neurological problems and conditions such as Down Syndrome.
What causes reflux?
There are probably several different causes of reflux. Genetics seems to be a key factor in some families but it can also be caused by allergies and intolerances, many different neurological problems that make it hard for the muscles to work properly, or a really bad diet. Some medications can cause reflux. Many people with other digestive disorders such as slow intestinal movement or intolerance to wheat have reflux. In premature babies and young children we now believe that reflux is often caused by the digestive "autopilot" falling asleep at the wheel and letting the sphincter at the top of the stomach relax when it shouldn't.
How is reflux diagnosed?
Reflux can be very obvious or pretty subtle. You can often spot a baby with reflux by the fact that they spit up constantly and their mothers look like they are ready to collapse. Reflux in teens, however is often diagnosed by a doctor who is very familiar with reflux and has taken a very thorough history. Reflux may first be suspected by a neighbor who is familiar with reflux symptoms or you may have to go to several different doctors until one finally sees the pattern that explains everything.
There is no perfect test for reflux. Testing may not even be necessary to diagnose reflux - it can be diagnosed based on asking lots of questions. Often testing is done on older children to make sure that they don't have a lot of damage to the esophagus. Some children with damage require periodic monitoring of the condition of their esophagus. Monitoring of the acid levels in the esophagus can help to determine whether reflux is causing symptoms that are somewhat confusing. Other tests may be done to rule out conditions that have some of the same symptoms as reflux.
How is reflux treated?
One of the main treatments for reflux is to search for your individual triggers. Some people find that avoiding certain foods can help a lot but few teens are able to totally cure their reflux through diet.(Many adults have great success with simply avoiding spicy foods.) Exercising or lying down on a full stomach often increases reflux and should be avoided. Many people sleep with the head of the bed raised to avoid night time reflux. Reducing stress may be helpful, but again, this is not likely to bring about a cure. Tobacco and alcohol are definitely triggers because they cause the sphincter at the top of the stomach to relax.
There are many medications for reflux. It is important to ask your doctor a lot of questions about the medications they recommend. Some are to be taken only for occasional reflux while others must be taken faithfully every day or they won't work. Your doctor may choose to use a mild medication at first and move you up if necessary. Other doctors prefer to give a very powerful medication for awhile with the goal of backing down to something milder. The medication schedule can be important so try hard to follow it exactly.
What special issues do kids with reflux face?
You guys are the experts on how reflux affects your lives. You can learn more about this from each other than I could begin to tell you. I can say that many teens experience special challenges because so many doctors are unfamiliar with reflux in teens and don't quite know how to treat you guys. In some cases, they don't know what to do medically and in some cases they just don't know how to relate to teens and encourage you to participate in making decisions that affect you.
One thing that can be particularly difficult about reflux is getting other people to understand what you are going through. If you break your leg nobody expects you to participate in gym class, but if you are in chronic pain that isn't visible you may find you spend way too much energy trying to get people to listen. It may be hard for them to understand symptoms that come and go. If you can participate in an activity one week but not the next, people start to think you are faking it. Many people with chronic or intermittent health problems face these same issues.
Coping with reflux
Here is where you guys need to start helping each other. Ho do you make it through the day when things are bad? How do you tell your friends? How do you handle feeling rotten at school? Is it affecting your work? Some online support groups have a reputation as being just a bunch of whining, but most provide a place for you to get answers to these questions. This is exactly why online support groups are so popular and helpful. With a disease like reflux that isn't diagnosed very often, online may be the only place where you can find others who are going through what you are going through. Who knows, maybe you can find somebody who is one step ahead of you who can show you the ropes.
Good luck. Having reflux is a royal pain but together you can learn to deal with it better. This introduction just covers the very basics