Why acid reflux is commonly misdiagnosed – and everything you need to know to make the best decision for your baby

It seems like every single baby I come across these days has been diagnosed with acid reflux. As a NICU nurse, this is crazy to me! Over 75% of parents that I speak with recently has a baby diagnosed with acid reflux. It’s quickly becoming a very overdiagnosed disease and misdiagnosed disease and here’s why:

Before we start, here’s a quick anatomy lesson! Esophagus – your “food tube” – a muscle tube that connects your mouth to your stomach. Stomach – an organ that breaks down food for digestion through acid secretion Esophageal sphincter – a circular muscle that opens and closes at the end of the esophagus right where the esophagus meets the stomach. The sphincter keeps stomach contents in the stomach and prevents the acidic stomach contents from entering the esophagus (aka: reflux!)

What is acid reflux?

Gastrointestinal reflux disease (GERD) is the medical term for reflux. It is a condition in which the contents in the stomach rise up through the esophagus AND causes symptoms + complications (most commonly, no weight gain, pain, discomfort). To read more about evidence based treatment in true acid reflux, read here! What causes acid reflux? In infants, acid reflux can be caused by many factors:

• Prematurity
• Slow gut motility
• Slow stomach emptying also known as pyloric stenosis
• True food intolerances
• A rare condition called eosinophilic esophagitis

How much spit up is “normal?”

In infants, the esophageal sphincter is not developed until 4 months of age. What does this mean? It means that spit up IS NORMAL! Since the sphincter is not developed until 4 months of age, the esophagus is an open hose. There is nothing in place to prevent milk + stomach contents from coming up from the stomach into the esophagus.

Therefore, SPIT UP IN BABIES IS NORMAL!! Spit up does not equal acid reflux! Say it with me: SPIT UP DOES NOT EQUAL REFLUX! Even in cases where baby is spitting up large quantities after every feeding.

Have you seen Kate’s IGTV on reflux? Click here!Finn was a huge spit up kid. He would just pour out spit up all day after every. Single. Feeding. I would do laundry loads of just burp clothes – no joke. Did Finn have reflux? No! And here’s why:

Finn was (always) gaining weight.

• He did not have pain when spitting up.
• Pain would be arching of the back, severe discomfort about 45 minutes after a feeding.
• Finn did not have persistent projectile vomiting.

He was just a happy spitter-upper!

Roey however, was spitting up so much and not gaining weight. She had true mechanical reflux and required a speciality formula. Learn more about it in my IGTV above.

What are the signs and symptoms of reflux?

Persistent vomiting with:

• NO weight gain or very slow weight gain
• Arching with vomiting or about 45 minutes after a feeding
• Pain with vomiting
• Projectile vomiting that is persistent and accompanies no weight gain or very slow weight gain
• Persistent fussiness, inability to calm, poor sleeping accompanied with the above signs
• Crying, arching of the back with feedings accompanied by the above signs

What are the signs and symptoms of overtiredness?

• Persistent fussiness
• Inability to settle
• Poor sleeping
• Poor napping
• Poor feeding
• “Colic” diagnosis
• “Reflux” diagnosis

Sound familiar?

That’s because signs of overtiredness are the exact same as colic + reflux. Keep this in mind as we will touch on it later!New Paragraph

What is the treatment for true reflux? 

Non-medical interventions:

• Non-medical interventions include holding baby in an inclined position for 15-30 minutes after a feeding. This helps stomach emptying and lessens reflux.
• Crib wedge: ***This is something you need to get your pediatrician’s approval on. A crib wedge inclines the mattress slightly to help with stomach emptying.

**Remember – inclined containers (such as RockNplays [which have been recalled], DocAtots, SnuggleMe, Swings, carseats etc. are NOT safe for unsupervised sleep). Read more in my post here.

Medication:
**Zantac (Ranitidine) has been recalled. Read more here.

• Prilosec (Omeprazole) – Prilosec is a proton pump inhibitor (PPI), which in non-medical terms, means suppresses stomach acid secretion by certain cells in the stomach. Therefore – Prilosec also decreases the acidity of the stomach contents. It does NOT prevent the contents of the stomach from coming up through the esophagus. It just makes that stomach content a little less painful.

Prilosec works on the same day as when the first dose is given, but some full effects may take 7+ days.

SO:
If your baby has true reflux and it’s painful, you’ll see relief from Prilosec on the first day.

Will Prilosec make your baby spit up less?

NO! Because remember, spit up doesn’t equal reflux.

• Nexium (Esomeprazole) – I won’t get too medical on you, but basically Nexium works the same way and is in the same drug class as Prilosec, but some studies show it’s longer acting. The effects of Nexium can be seen within 48 hours.

Specialty formulas:

• Enfamil AR is a special formula for frequent spit up that is associated with poor weight gain. AR is a milkshake consistency, so this formula actually does prevent the act of stomach contents from entering the esophagus at all or as far up because of how thick the formula is.
• Similac Spit Up – Similac Spit up is the Similac version of Enfamil AR, just a different brand.

Thickening of Breastmilk:
In some cases where spit up is causing poor weight gain, a thickener can be added to breastmilk. The thickener acts as the AR would – thickening the consistency of the breastmilk to prevent the actual act of the spit up or just making it less severe. This GelMix thickener is added to breastmilk in a bottle (**PLEASE CONSULT YOUR PROVIDER BEFORE USING!)

What if my baby has these symptoms and isn’t gaining weight? 

If your baby isn’t gaining weight, your provider is most likely already on top of it. Hopefully you have tried some of the medications listed above and maybe even in combination with a thickener or a specialty formula. These can be used in combination. If you haven’t had imaging such as an ultrasound done, and baby still isn’t gaining weight with intervention, I would suggest talking to your provider ASAP about imaging.

If your baby is having persistent projectile vomiting and is not gaining weight, they may have a condition called pyloric stenosis. This is a serious medical condition where the opening at the other end of the stomach, where the stomach meets the intestine, is way too small. This means that breastmilk or formula cannot pass through to the intestine (or very little is passing).

Check out my IGTV where I share my experience about Roey’s reflux and true mechanical reflux when she wasn’t gaining weight.

Signs + symptoms of pyloric stenosis would be:

• Persistent projectile vomiting + poor weight gain
• Think the exorcist! It will shoot FEET away from you.
• Vomiting an entire feeding persistently + poor weight gain
• An olive shaped protrusion near baby’s stomach

*Occasional projectile vomiting is not of a concern unless baby becomes dehydrated (having less than 6 wet diapers a day) or is not gaining weight. Remember the underdeveloped sphincter doesn’t develop until around 4 months of age.

What if my baby is spitting up frequently, is super fussy, gassy, and/or colicky, but is gaining weight?

Remember those signs of reflux we talked about earlier that are the same exact symptoms of overtiredness? Your baby is most likely overtired!

Babies only have one way to communicate – crying! That means: they cry when they are hungry, tired, overstimulated, understimulated, refluxing, gassy, sick, etc. How the heck can we determine what’s what?

We do this by ruling out overtiredness. Based on age in weeks, baby needs anywhere from 14-18 hours of sleep per day until they are toddlers. The younger they are, the more sleep they need. This total hours of sleep include nighttime + naps. I look at awake times etc. to determine if baby is overtired. Once we can rule out that baby is getting appropriate sleep, then we can start to look deeper if symptoms are still present.

Here are a few stories I love to share:

Case 1
I had the sweetest mama contact me one Sunday morning in an absolute frantic state. My heart went out for her. Her second baby, at the time 8 weeks old, had a huge turn of personality – going from a happy, well rested baby that was sleeping 6+ hours per night to a complete colic stage.

Mom stated her baby had cried for 12 hours straight the day before, and she was simply at a loss. Parents have gone to great lengths to figure out baby’s diagnosis – mom had stopped breastfeeding because of a diagnosed milk protein allergy, baby was on the most sensitive formula for MPA, maxed out on reflux medications, seen the pediatrician multiple times, a pediatric gastrointestinal specialist, chiropractor. You name it, they did it!

She asked me to come over for a consult, but I knew it would be much more than just sleep that I was going to take a look at. Here are the reasons:

• It is very unusual to have a milk protein allergy (MPA, I touch briefly on this below) diagnosed at 6 weeks of age in a non-dairy free breastfeeding mom.
• Baby had a huge shift in personality around 6 weeks and no previous sleep issues.
• Baby was already on the most sensitive formula (Neocate), which true MPA kids see a drastic, positive turn around within days of starting this formula (it had been 2 weeks since this formula change).
• I was curious to see baby’s sleep environment and schedule, if any had been implemented.
• I wanted to get my hands on a feeding to see how baby was taking to the bottle. SO MUCH can be seen from a feeding!!!
• I was curious to see the physical reflux symptoms baby was having.

I looked closely at a feeding and fed baby myself. It was clear that baby did not like the taste of the neocate (it doesn’t smell great but haven’t personally tasted it myself).

Baby had been up for about and hour, so I swaddled him and put him down for a nap, after assessing his room for safe sleep (looked great!) and sound machine at the right level, etc.
Baby went right to sleep.

Parents stated this was not the norm, and were grateful for him to sleep for a bit so we could chat.
I asked parents what they thought, what their gut feeling was about the colic, MPA, etc. Neither was fully convinced that either diagnosis was accurate, and my feelings were the same. I’m not a physician or a Ped, but I do have a TON of experience with true reflux as a NICU nurse.

So together we came up with a plan. A set nap schedule for the rest of the day. A new swaddle. A few other minimal environment changes.

Baby fought that first nap and the afternoon one. But I wasn’t ready to give up yet! And guess what….baby, for the first time in 2 weeks, slept for more than 1.5 hours at night. In fact, he slept TEN STRAIGHT HOURS.

Mom texted me in tears the next day, of happiness of course. We kept to the routine and his symptoms of reflux, colic, and MPA were GONE in just 1 week.

Even the GI specialist said he “couldn’t believe he was looking at the same baby”.

Since our time together, baby has moved toward a regular formula, reflux signs have been greatly reduced, and baby sleeps 10-12 hours at night with good naps during the day. His intake of formula has increased drastically, as he is well rested and ready to feed when it’s time.
So:

• Did baby have colic? No! He was exhausted!
• Does baby have MPA? Most likely no. We are moving toward a non-MPA formula (off the neocate as of now) so we will know more soon.
• Does baby have reflux? Mild reflux. But symptoms were dramatically reduced within 1 week of a sleep routine.

What’s Kate’s diagnosis for baby? OVERTIREDNESS!

Case 2:
I received the most heartbreaking email one afternoon from a mama who was completely lost. At her whit’s end, no idea what to do or where to turn. Her sweet baby girl barely ever slept, unless she was being carried or bounced continuously on an exercise ball. Parents were completely exhausted, physically and mentally. They had tried chiropractors, different pediatricians, lactation consultants, everything!

She reached out to me for a sleep consult, but it ended up being so much more than that. This baby was about 4 months old, ready for cry it out age wise, but parents were ready to try anything. What they were doing was not sustainable anymore.

I took a look at the big picture – baby was exhibiting colic symptoms, not sleeping. At this point, mom was breastfeeding and we knew it wasn’t a MPA or a dairy intolerance as baby was not showing signs of mucous in her stool, blood, etc. Mom was ready to wean, but was terrified for fear that colic would get worse.

Swaddle had already been dropped. Baby typically woke up every 1-2 hours at night.
Not going to lie, baby has a rough first night. This is typical!! But everything fell into place within a few days.

Baby started sleeping – 11 hours at night, and 2 hour naps during the day.
And baby did something for the first time in a long time – smiled! Had happy awake periods. Went down easily. Was well rested, eating well. Took a bottle, weaned to formula!
Colic symptoms were completely diminished with a sleep routine. Sleep is what baby needed!

Kate’s Diagnosis: OVERTIREDNESS!

Moral of the story:
Sometimes, providers are quick to diagnosis reflux without taking into consideration the WHOLE picture. If we rule out overtiredness, we can pinpoint reflux. Sleep routines are EVERYTHING! Don’t listen to me, listen to my happy, healthy babies and clients.

A VERY Brief Overview of Milk Protein Allergy
I am not going to spend a ton of time talking about MPA because it’s a whole separate blog post in itself. But I just wanted to talk a bit about it since MPA are also commonly misdiagnosed and grouped together in the “reflux” family.

What I mean by this is that if a baby has reflux symptoms, medications and diet restrictions or specialty formula isn’t working, the leap to a MPA is commonly diagnosed. Must be a MPA right? If baby is still having “reflux” but traditional therapies are not working.

It’s true that true MPA can cause extreme irritability, colic, fussiness, and cause babies to be difficult to console. So again, the symptoms are there – but are we really getting to the root cause?

MPA symptoms include, but are not limited to:

• Stomach upset
• Diarrhea
• Typical allergy symptoms such as trouble breathing, itchiness, swelling, hives

Milk intolerance symptoms include, but are not limited to:

• Diarrhea or liquid stool
• Blood flecks in stool (these are often microscopic)
• Refusal to eat, irritability or colic
• Symptoms are almost always present within the first 2 weeks of life
• Heavy mucous in stools (stools are “boogery” in consistency)

Diagnosis of MPA, MPS:

• Blood test
• Stool (poop) test
• Skin testing for allergies
• Pediatric allergist

Treatment of MPA/MPS:

• Eliminating dairy in a breastfeeding mom
  • Dairy is present in the body for up to 2 weeks from the last dairy ingestion, so this can be a long process before you see results.
• Specialty formulas
  • Hypoallergenic formulas are partially broken down so digestion is easier for babies with true MPA/MPS
  • You will see drastic positive results in your baby’s behavior once implementing this formula if baby has a true MPA/MPS
• The above, possibly in combination with a reflux medication

SO:
If your baby has a true MPA/MPS:

• You should have your provider order a stool sample to be tested for microscopic blood. If this is positive, further testing should be done and you should see a pediatric allergist.
• The allergist will best help you determine the route you should take (formula, elimination diet, medication, etc).
• You will see a DRASTIC change in your baby’s personality once implementing a formula for MPA/MPS, or two weeks after an elimination diet if breastfeeding.

My baby had a streak of blood in their stool. Is this a MPA?
Most likely NO. You should definitely talk to your provider if your baby has any type of blood in their stool. However, things like a diaper rash and a fissure (a small tear in the baby’s anus) can also cause blood to be in baby’s stool.

Like I mentioned, this is a BRIEF overview of MPA/MPS! There is much more to be said about this topic, but that’s for another day!

***The point of this blog post is to inform you, educate you, and guide you to make your OWN decisions for your baby. Do not make medical decisions without talking to your provider, but be the voice for your baby by educating yourself on these topics!***

Watch our workshop! Watch our recorded workshop, “Bottle Refusal and Tips.” Join Lauren, NICU RN and mother of 2, discuss tips for bottle refusal in infants. She discusses different strategies for avoiding bottle refusal along with tips and tricks for reversing bottle aversions. She also goes over alternative methods for giving breast milk/formula to babies who have ongoing issues with bottle refusal. 

Have more questions? Schedule a text or video chat consult with Kate, Lauren or Natalie (NICU RNs) and they can help answer any questions that you have!

Other helpful blog posts:

• Correctly bottle feeding your baby 
• How to supplement with formula
• Transitioning from formula to milk
• Everything you need to know about formula