GERD: One Mother’s Two-Year Struggle for a Diagnosis

IN THE TRENCHES – What a Parent Needs to Know About Gastro-Esophageal Reflux Disease

Like a lot of new parents of a child with cerebral palsy, I tended to think of CP’s affect only on muscles involved in movement and mobility. I didn’t consider CP’s possible impact on muscles that help gastric emptying, swallowing, bowel mobility and a host of other body functions. But I learned fast, and I learned the hard way.

From birth, feeding my daughter, Danielle, was always a long, painstaking ordeal. It often took up to three hours to feed one 8-ounce bottle of formula. Afterward, she would scream, arching with discomfort and no amount of burping or comforting seemed to help.

At first, I thought she was experiencing colic and consulted her pediatrician. He suggested she could be refluxing and ordered a Gastrointestinal Endoscopy study. It came back “reflux within normal limits.” When Danielle was about eight months old, we started nasal gastric (NG) tube feedings. Although this proved to better meet her nutritional needs with less effort on her part, she continued to show signs of pain and discomfort after feeding.

After using the NG tube for a year, I noticed Danielle had developed a cough, which her doctored diagnosed as a cold. After 3 months of dealing with the “chronic cough” I was still being told it was a cold. I said if that was the case, then the doctor needed to contact the Guinness Book of World Records because this “common cold” had lasted more then 3 months and she was now spitting up formula with the cough. That got his attention. He ordered more tests, and although they were inconclusive for reflux, they indicated a delay in gastric emptying. So, after18 months of using a nasal-gastric tube, doctors recommended Danielle undergo surgery to have a G-tube permanently implanted.

At first I resisted. I was adamantly opposed to any surgical intervention. I had seen children at my daughter’s school with the G-tube, and it was very intimidating to me, as was the thought of the procedure itself. But it became obvious even to me that our daughter’s quality of life was being compromised as a result of my fears and resistance. I knew we couldn’t continue to use an NG-tube for her feedings long-term; it was causing chronic irritation to her sinus cavity, and it was getting increasing difficult to insert the tube. The doctors said Danielle also needed a nissan fundoplication procedure, in which the top of the stomach is banded to prevent reflux and aspiration. I finally agreed.

After the surgery we learned the worst. The surgeon said she was shocked by the condition of my daughter’s esophagus. It was so damaged and eroded that she lost a lot of blood during the procedure. The cause? Two years of undiagnosed and unchecked reflux. Two years of pain and suffering. I was angry but not surprised. I knew something had been wrong.

The nissan fundoplication and G-tube placement turned out to be the best decision we could have made. It resolved the reflux and discomfort associated with it. The G-tube alleviated the all too frequent trauma of passing the NG tube, and best of all, it allowed our daughter to get the nourishment she needed.

Lessons Learned:

• GI studies can be misleading and subject to interpretation. Reflux doesn’t happen on command during a GI study.

• Follow your gut instincts. A parent knows their child better than anyone. If you suspect something is wrong, then you probably have cause for concern and you need to persevere until you get answers.

• You are your child’s only voice. Keep a journal, noting feeding regiments, times, volume of intake and description, time and duration of any adverse behaviors you may witness that make you suspect reflux or other GI issues. A journal may show a pattern and will help give your doctor insight.

• Consider making a video of what you see, again, to help the doctor understand what you and your child are experiencing.

Signs and Symptoms:

Reflux occurs when the sphincter (muscle) between the esophagus and stomach doesn’t work properly, allowing stomach acids to back up into the esophagus and causing a burning or heart burn sensation. In non-verbal children this may lead to range of behaviors after feedings:

• Obvious discomfort and irritability, including screaming, posturing and arching

• Coughing

• Spits of formula or food accompanied by coughing

GERD is especially difficult to diagnose in young non-verbal children. But if left untreated, chronic reflux can cause serious complications. Inflammation of the esophagus from refluxed stomach acid can damage the lining and cause bleeding or ulcers, also called esophagitis. Scars from tissue damage can lead to strictures, narrowing of the esophagus, that make swallowing difficult. This is what happened to Danielle.

There are medications and many non-invasive options for managing reflux and delayed gastric emptying. In severe cases like Danielle’s, your doctor may recommend surgical intervention.

Bottom line: You are your child’s best advocate. If you think there’s something wrong, don’t stop asking questions and challenging your doctor. They are not always right.

The following links at National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) provides FACT SHEETS and in-depth information on GERD:http://digestive.niddk.nih.gov/ddiseases/pubs/gerd/#1 Gastroesophageal Reflux in Infants

Gastroesophageal Reflux in Children and Adolescents

For more information please contact:

http://www.cpfamilynetwork.org/