It took eleven long months for Jacob to be diagnosed with Gastroesophageal Reflux Disease (GERD). His mom, Meg contacted me recently to tell her story. Sometimes the journey to GERD diagnosis is lightening fast. If your baby has typical symptoms of GERD, the doctor will diagnose and treat reflux right away. On the other hand, if the symptoms are not clear or the symptoms are uncommon, it can take a long time to get a diagnosis.
Early on, Jacob had symptoms of Gastroesophageal Reflux or GER such as spit up and fussiness. GER is common in infancy and resolves as the baby matures. Meg was instructed to change Jacob’s formula and hold him upright after a feeding. He gained weight slowly and Meg continued to worry despite reassurances from the doctor that he would get better in a few months.
Months past and Jacob continued to have worrisome symptoms during mealtime such as gagging and choking. He would occasionally vomit an entire feeding hours after the meal. When Jacob struggled with spoon feeding, he was referred to a feeding therapist. While he made some progress with accepting new flavors and textures, he continued to gag and vomit during and after mealtime. These worrisome symptoms prompted the feeding therapist to write in a report to the doctor that Jacob needed to be evaluated for GERD.
Meg said she tried to be proactive and have all of the tests and reports sent to the doctor. Somehow there was a communication breakdown. Did the doctor receive the report and read it? Did the doctor know further treatment was indicated? In retrospect, Meg wishes that she asked the doctor to read and review the reports with her. Apparently, the doctor didn’t know about the therapist’s recommendation or assumed the therapy was working and Meg didn’t pursue further evaluations or treatment.
Jacob’s feeding was about the same despite being in feeding therapy. At the same time, his GI symptoms progressed to regular vomiting, throat clearing and a cough associated with eating and choking. When Jacob was eventually seen by a pediatric gastroenterologist, he had GERD and painful ulcers on his esophagus.
Meg learned a great deal from this experience.
· Trust your Instincts: Moms often have a gut feeling something is wrong before anyone else.
· Get Copies of Reports: Send a copy of reports to the doctor and get a copy for yourself. Go over the reports during office visits.
· Ask: If you are concerned about something, no matter how trivial, you need to ask the doctor.
· Document: Take notes to help you remember what was discussed during an office visit, test or feeding therapy session. You may need to coordinate the care and treatment by alerting all of the care providers about new information and test results.
· Second Opinion: If you have communicated your concerns over multiple visits and you are not satisfied with the results, a second opinion may be needed.
Published On: June 25, 2010