Acid Reflux in Children: Not Just Heartburn

Nolan, pulling on his neck: pre-diagnosis
Nolan, pulling on his neck: pre-diagnosis

My Baby Won't Eat!

When our youngest son Nolan was born, he was a feisty baby and a great eater. He didn't really spit up very much, and was growing well.

When he was eleven months old, we were in the pre-operative waiting room for a sedated MRI of his inner ear (Nolan has a congenital hearing loss).  Out of the blue, the anesthesiologist walked in and told us, "I needed to take a look at him. He is underweight and I have to make sure he isn't emaciated."

I was shocked and panicked. Nolan's weight at his six month well-baby checkup was in the 50th percentile. Sure, he had lost a little weight at his nine month appointment, but he was still in the 25th percentile: the same percentile his older brother occupies. We had no indication there was anything to be concerned about.

Needless to say, immediately after his MRI, I scheduled a visit with his pediatrician. We discovered his weight had dropped to below the third percentile: our baby was officially failure-to-thrive. It was suggested that we were giving him too much milk and that he would gain weight again as his body adjusted to walking and weaning onto whole milk.

By the time Nolan was 18 months old, we were still getting the same line from his pediatrician. Don't worry, he'll catch up over time. Except he didn't. He began to have difficulty swallowing food, and would chew up his food, then spit it back out onto the plate. He was addicted to his sippy cup, and would pull on the front of his throat as he drank his juice. He would sometimes go days without eating more than three bites of food. His weight continued to fall off the weight charts.

Trusting my instincts, I called his ENT and scheduled an appointment. While ENT doctors do not typically handle eating disorders in children, we needed someone who would listen and share our level of concern. The ENT put Nolan on the scale, gasped when she saw his extremely low weight, and immediately booked several tests and an appointment with a pediatric GI specialist.


The Difficulty in Finding a Diagnosis

Since Nolan had difficulty swallowing, we were sent to a Speech Language Pathologist for a swallowing evaluation. She diagnosed Nolan with dysphagia, or difficulty swallowing. She could find no anatomical cause for the dysphagia, but noted that she had seen children with similar symptoms, due to acid reflux.

The ENT had ordered a gastric emptying scintiscan and an upper GI barium swallow test, to determine if there was any acid reflux present. The gastric emptying scan was a simple, though lengthy, test. Nolan drank some of his milk with a radioactive tracer, and a special camera took serial pictures of the food as it was digested by his stomach. The test took about an hour, and Nolan was very patient with being strapped down to the table in radiology. I called the ENT's office a couple of days later, and was told the report was completely normal. The scintiscan showed no reflux or other problems with digestion.

The Upper GI barium swallow was difficult, because Nolan refused to drink the barium. The radiology staff had to thread a naso-gastric (NG) tube down into his stomach. We were able to get the results from the radiologist immediately after the test: no reflux or anatomical abnormalities were noted.

While the test results were normal, Nolan was still not eating and losing weight by the day. The pediatrician insisted the problem was caused by us, giving him too much milk to drink. The ENT thought we might be too lenient with meal times. In complete despair, we were hopeful the GI doctor would have more insight into his eating issues.

Nolan's growth resumed once treatment with Nexium started.
Nolan's growth resumed once treatment with Nexium started.

Diagnosis: Reflux

The first appointment with the GI doctor was nerve-wracking, as we were pinning all of our hopes on her ability to discover what was wrong with our little boy. Typical 2 year old children will eat a cookie or other treat: our little boy would eat nothing.

When she noted that our little two year old weighed only 19 pounds, she put him on DuoCal, a calorie booster. She also ordered an upper endoscopy and 24 hour pH/impedance probe, to absolutely rule out acid reflux.

Staying overnight in the hospital was not fun, but the hope for a diagnosis elevated our spirits. The pH probe was difficult with a 2 year old, as his arms had to be kept in arm splints to keep him from pulling out his probe. The endoscopy showed mild esophagitis, but nothing immediately indicative of acid reflux.

Two weeks later, we met back at the GI doctor's office. She walked into the exam room and said, "Well, one thing is clear. He failed his pH probe, and he failed it badly!" After so many "normal" test results, we were shocked. Not only did the pH probe show he had acid reflux, but the severity was off the charts. His reflux was so severe, it was beyond the maximum upper limit on the scoring chart.

Nolan was started on 10mg of Nexium (twice each day), and within a few weeks his dysphagia disappeared and he began to gain weight.

24 Hour pH Probe

Down the Rabbit Hole

Over time, Nolan developed a few more medical conditions that truly worried us. We found out his scintiscan wasn't normal: upon meeting with our ENT and reviewing the actual report, we discovered he had delayed gastric emptying in addition to the reflux. Acid reflux and delayed emptying often go hand-in-hand with children, so we kept him on a low-fat, reflux friendly diet to help his stomach function.

By the time Nolan was three, he had four sets of ear tubes placed. The chronic ear infections were relentless, and took more of his precious residual hearing every time a new set of tubes would clog with a difficult infection.

A sleep study was performed when he was 2 1/2, to determine if he needed a tonsillectomy for obstructive sleep apnea. During that sleep study, we discovered that he had severe obstructive sleep apnea and severe central sleep apnea. This led to an MRI of his brain, to verify he did not have a Chiari malformation of his brainstem. We breathed a sigh of relief when the MRI was normal, but worried about the presence of such severe apnea in a young child.

The tonsillectomy and adenoidectomy were performed, and a few months later another sleep study showed disappointing results. Not only was his severe obstructive apnea still present, but it had gotten worse! No one understood how this was possible, and our ENT ordered a bronchoscopy to find the level of obstruction.

The bronchoscopy did find the reason for Nolan's obstructive apnea: severe acquired laryngomalacia, or a floppy airway by his voice box. He had surgery to correct the airway problem at the age of three.

The surprising thing is that all of these problems had a single cause: acid reflux. In Nolan's case, he has both gastric reflux and extra-esophageal reflux disease. The acid from his stomach would go up his esophagus and into his larynx (voice box) and nasal cavities. The inflammation from this process caused his chronic ear infections, sinus infections, weight gain and feeding issues, and chronic upper respiratory infections. In the end, the reflux even caused his airway to collapse.

Signs of Childhood Acid Reflux

Signs of Acid Reflux in Infants

  • Irritability
  • Failure to gain weight
  • Crossing percentile curves on the growth chart
  • Chronic cough
  • Persistent bouts of pneumonia
  • Apnea
  • Apparent Life-Threatening Events (ALTE's)
  • Painful or difficulty swallowing (dysphagia)
  • Frequent arching of the back
  • Vomiting may or may not be present

Signs of Acid Reflux in Toddlers and Children

  • Failure to thrive
  • Weight loss
  • Difficulty sleeping
  • Sleep apnea
  • Chronic upper respiratory infections
  • Asthma
  • Hoarse voice
  • Dysphagia
  • Chronic sinusitis or ear infections
  • Upset stomach
  • Vomiting may or may not be present

Trust Your Gut

If your child isn't gaining weight or has other difficulty eating, get a thorough evaluation by a physician who specializes in gastrointestinal disorders (a GI doctor). Children who stop eating, growing, or gaining weight should have a thorough evaluation. Thanks to our watchful GI doctor and ENT, we have a healthy, thriving little boy once more!

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Comments 6 comments

habee profile image

habee 4 years ago from Georgia

Great info! My oldest grandson has had acid reflux for years. I'll pass this on to his mom. Voted up!


leahlefler profile image

leahlefler 4 years ago from Western New York Author

Thanks, habee! My little guy certainly has an unusual level of acid reflux (after all, few children have the insane airway issues that my little one has), but pediatric GERD is far, far different in effect from the adult version. Particularly since it can affect sleeping, growth, and development! I hope your grandson has it well controlled on medication!


Anonymous 4 years ago

Hi! I'm glad u postd this. Our son has severe GERD since birth

And just recently had ALTE episodes of cyanosis and stops breathing! Pretty scary. After multiple tests which all came back ok except the ENT.. It showed moderate irritation of vocal cords and laryng.


leahlefler profile image

leahlefler 4 years ago from Western New York Author

Hi, anonymous - there is a very good chance your son has extra-esophageal reflux or LPR reflux. This is the type of reflux my son has, and often the regular imaging tests (like barium x-rays) come back "normal." The airways are usually highly affected in our kiddos - Nolan has laryngomalacia (floppy larynx) that was only discovered at age three. We've had a very hard time controlling his reflux, and pH probes show the medication just isn't working. With uncontrollable ear infections and now cellular changes to his digestive tract, he's going in for a Nissen Fundoplication this March. It is crazy how reflux can cause so much harm in children!


Kristin @littlemamajama 3 years ago

Yuz sent me the link to your post. Thank you so much for sharing your child's story. We're going through such a similar process with our 2-year-old. I *know* he has reflux, but the GI doctor won't do a work up. He now has a g-tube. The pediatrician prescribed Zantac and that is helping. I'm in the process of switching GI doctors, and this is all so incredibly frustrating.

Sending best wishes to you and Nolan. Thank you again for sharing your story. I know I need to keep pushing for help for my son.


leahlefler profile image

leahlefler 3 years ago from Western New York Author

Oh, Kristin, it is so very frustrating. Our pediatrician was useless. We didn't have a GI (and our GI doctors have also been fairly useless, for the record). Nolan is primarily treated by his ENT, who handles airway disorders as well as hearing loss - so she recognized the symptoms and sent him in for full testing. The impedance probe is the only test that will definitively show reflux vs. no reflux... Nolan showed no reflux on his upper GI barium, and also showed no reflux on his gastric emptying scan (though he did show gastroparesis). His pH/impedance probe revealed severe acid reflux, which was helped greatly by Nexium and Zantac. He now has a g-tube and fundoplication, as the medication stopped working, but that is rare and most children do well with medication. Huge hugs to you and I hope you can find a doctor who will do a thorough evaluation!

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