Informed Medical Consumers: Parent Medical Knowledge and Participation
[This article first appeared in the PAGER newsletter, Reflux Digest(Summer 2004) as the Editor's Corner article celebrating 12 years of PAGER]
Many things have changed in the twelve years since PAGER started as a small support group in 1992.
In 1992, the parents who contacted us were desperate for information. The internet was not yet very useful and most of our members didn’t even have modems to connect their computers to the outside world. Many went to the medical library and found that the few articles on acid reflux in children were impossibly dense and technical. They were confused and needed help understanding the disease.
In 2004, the parents who contact us are still thirsty for information. There is a lot of good information on the symptoms of the disease and some good information about standard treatments. But information beyond the basics is more difficult to find. Our members want to know about protein intolerance, tube feeding, rotation diets, false negative pH probe results, intractable constipation and other highly advances topics in GERD.
In 1992, the parents who managed to find us had children that were very sick. Most had experienced a very significant delay in getting a diagnosis and many of the children were in pretty deep trouble. The average child was over 2 years old and somebody was just putting together the clues and suggesting that acid reflux might be the cause of the trouble. Sadly, the person making the suggestion was not always the child’s pediatrician – it was often a friend or a neighbor.
In 2004, the parents who find our web site are much more likely to have recently diagnosed infants. We still get occasional messages from parents who say they wish they had found us years ago when they first needed us, but these notes are becoming rarer. Our membership is divided between newcomers to GERD and parents who have been dealing with it for years. The mix of children ranges from newborns with mild GERD to teens who are unable to attend school due to pain.
More Parent Involvement
In 1992, we were watching the early signs of a major shift in consumers wanting to be more involved in their own medical decisions. In my daughter’s first year of life, I met many doctors who were very happy to answer questions and keep me informed about her care. But, when I wanted to make decisions about her care, I quickly learned which doctors wanted me to shut up and go away. One even transferred my daughter out of his hospital when I confronted him for giving my newborn a formula that her brother was allergic to rather than the perfectly good breastmilk I had worked to hard to provide. I also had a fascinating debate with a resident regarding which tests for GERD were most appropriate. Later he came back and told me the boss would do whatever he wanted regardless of what I requested. He told me that most of the doctors he worked with didn’t allow patients much control. At yet another hospital, I questioned the need for a test to prove reflux in a child who puked 40 times per day. I was told that the test was necessary because they would dismiss her as a patient if I didn’t let them do the tests they wanted to do.
In 2004, our parents have an easier time discussing their child’s care and quite a few are highly involved in decision making. Many of our parents are even treated as equal partners with the doctors caring for their children. Many doctors realize the value of partners who can devote themselves to learning about one topic and who learn to be good observers. Unfortunately, some of our parents are still running afoul of doctors who don’t appreciate a lot of questions and consider parent ‘involvement’ to be ‘interference’.
In 1992, most of the children in our small group were on Tagamet, antacids and Reglan. A few children were on Pepcid or Zantac and a few on barrier agents such as carafate or gaviscon. There was a cookbook mentality of diagnosing and treating all children with GERD in the same way. Many children endured unnecessary tests and were stuck on meds that didn’t help them.
During the 1990s cisapride became popular as did proton pump inhibitors. These completely changed the treatment of GERD. For the first time, treatment was being offered for children with severe pain who did not have significant damage due GERD. Reglan, tube feeding and surgery became less common as doctors used stronger acid suppression and became more inclined to wait until a child was older before giving up on the hope that symptoms would fade with age.
In 2004, there have been dramatic changes in the way GERD is treated in children. The idea that reflux is not a single disease with a single treatment path is now widely accepted. More children are being put on dietary interventions and tested for allergies. Pharmaceutical companies are finally paying more attention to their smallest customers and conducting more safety studies. After ChocoBase was developed by an independent researcher, manufacturers are finally listening to parent complaints about products that their children can’t swallow and developing new options. New surgical techniques are being developed for GERD even though we now know that surgery isn’t perfect and doesn’t work for everyone. Cisapride is now known to cause too many unpredictable and dangerous side effects and was taken off the market.
Research shows that neurological reactions to Reglan are common. Several other GI medications for nausea and motility also have a risk of very serious neurological reactions. Oddly enough, while researchers are gathering more and more data about unpredictable and potentially permanent side effects of Reglan, common perception seems to be the opposite – we hear all the time that doctors feel the risk of side effects is very low. This is why I collaborated with a friend on an article in Practical Gastoenterology reminding gastroenterologists to use motility and nausea medications very cautiously.
The article appears in this issue of Reflux Digest with permission from Practical Gastroenterology. They have also allowed us to post it on our web site at www.reflux.org. [The journal article is in the Reading Room in the Advanced Topics Section]
The article is scary, but you deserve to understand your child’s care fully. Being an informed medical consumer helps you work WITH your doctor to make the best decisions for your child.
Take Care of Yourselves,