History 301: When to switch doctors

Last fall, after learning Stanton had pretty moderate damage in his esophagus, our GI changed Stanton’s medications. He had always taken some variation of Prevacid, but the GI suggested and prescribed Nexium in the morning, Carafate 3 times a day and Axid at night. We had a really tight schedule of timing the medication and convincing Stanton to take it. The GI also started Stanton on a prescription milk called Vital Jr. This is a high calorie, lactose free, creamy canned milk. All of the milk and medication changes for Stanton happened at once and were quickly accompanied by severe diarrhea throughout the day. So we spent the fall and winter not only dealing with constant vomit, but also 9-10 blowout diapers a day. I documented everything so I could prove to the GI at our November visit that we still didn’t have the right combination. The November visit just brought forth an increased dosage of all the medications. This was a big “ah ha” moment for me – I knew I needed to find a doctor who would partner with me. I felt as though this GI wasn’t listening to me, validating my concerns, nor looking for an answer. I knew there was more going on, but couldn’t prove anything. Ugh…. We endured the Thanksgiving and Christmas seasons with bouts of upper respiratory infections, antibiotics, steroids, breathing treatments and the 3 reflux medications.


I spent the holiday season and rang in 2010 becoming an expert on all things reflux. I switched pediatricians after finding a clinic more “in the know” with special needs issues, got to know our newly referred out-of-state Developmental Pediatrician and started genetic testing. We spent lots of time at visits, testing, etc. As the new year began, something inside of me changed. I made the conscience decision to fight for Stanton’s health and make 2010 the year of answers. Our family switched from survival mode to fighting mode!

I soon discovered that the leading reflux research for babies and toddlers is being conducted at the University of MO at a clinic called MARCI-KIDS. I went to their website and found lots of medical information. I printed out roughly 36 pages of research and armed myself with knowledge and possibilities for Stanton’s January GI appointment. The GI thumbed through it while his gaze remained on me….stating he didn’t agree with new research or test methods. He reminded me that all of the invasive testing revealed no signs of acid. I reminded him that there is damage in Stanton’s esophagus and the vomiting is still occurring and now we have the added benefit of constant diarrhea. I told him he had not gotten to the bottom of it. The GI handed me a referral to an intensive feeding therapy program and left the room.

In January Stanton got really sick AGAIN with pneumonia and was completely lethargic. The pediatrician really wanted us to go to the hospital. Stanton’s respiratory rate was lingering at 40% which is the admitting number. Two breathing treatments in the doctor’s office increased his rate to 55% which gave me the green light to take Stanton home. We spent the next 48 hours on standby, giving Stanton a breathing treatment every 2 hours and talking to the doctor every hour. Once we cleared the critical point, the pediatrician asked what our GI’s plan for Stanton involved. I began to cry and explained my frustration. I then shared with him the research from the University of MO and he replied with “Well what are we waiting for?” Our pediatrician agreed that it was worth a try so he signed off on all the research paperwork and by February 1st we began giving Stanton the research medication.