Infant Silent Reflux Is NOT Silent – Tongue Ties and Lip Ties DO Matter

Infant 'Silent' Reflux is NOT Silent - Tongue Ties and Lip Ties DO Matter | thisgratefulmama.com

When our third baby was born, I knew something was not right when I nursed her, even in the hospital. Experience nursing her two siblings, something just did not feel right.

Our daughter could not open her mouth wide to nurse, even with me using my finger to open wider. Once she did latch, she could not stay on, and was constantly gulping air and choking on milk. 

Our daughter needed to be burped every few minutes or she would spit everything back up and would writhe in pain. And when she burped, it was not a burp you’d expect from a tiny baby. No, she burped like a grown male after they gulp down a whole can of pop.

Buuuuuuuuuuuuuuuuuuuuuuurp.

Seriously. You cannot believe these massive man-burps from her tiny body. Then she’d resume eating, and to relive writhing and crying, she’d need to burp again.

Buuuuuuuuuuuuuuuuuuuuuuurp.  

Again and again and again. Through the feeding and afterwards. The amount of air she swallowed was remarkable.

And the noise. When she nursed, there was this strange ‘click.  Our other kids didn’t do that, and no adjustment to the latch made it go away. In the hospital, the noise reminded me of something I’d read on Facebook in the infant reflux support group called Reflux Rebels. Several people had posted about how their baby had a tongue tie or lip tie and ‘clicked’ while nursing. Other than reading about ties there, I knew nothing about them and knew no one whose child had them.

In addition, our daughter’s tongue was ‘heart-shaped’ because the tip was indented. I learned later this is a rather obvious sign of a tongue tie. The frenulum below the tongue is so tight that it pulls the tip of the tongue down and back, preventing it from lifting up and coming forward as it needs to in order to nurse. Our daughter could not stick out her tongue at all but we didn’t know that quite yet.

As we researched ties, we asked two pediatricians and a lactation consultant in the hospital to assess our daughter. ONE pediatrician confirmed a possible minor tongue tie but told us not to worry about it. The lactation consultant and other pediatrician dismissed the idea completely. So, I went home blaming a fast milk let-down and a baby with a small mouth, assuming we’d just figure it out with time.

I assumed as she grew the nursing woes would resolve themselves, but they did not. And when she began to have issues with acid reflux at 6 weeks, the excessive air-intake became a huge problem. All that air kept forcing the acid right back up and the pain it caused was obvious. Despite my initial denial that yet another of our children had silent reflux, the rapid onset of symptoms confirmed we needed to treat it right away.

This wasn’t our first rodeo with reflux.  I had already eliminated dairy and soy from my diet before our daughter was born because our other children could not tolerate them at all. I was also already avoiding foods that trigger reflux in adults. We recognized the reflux symptoms – refusal to feed, arching back and screaming in pain (aka. colic) right away. Into the pediatrician we went, feeling defeated. I nursed the baby in the office and the symptoms were agreed upon by the pediatrician and she prescribed Zantac.

After two weeks, we were disappointed to find she was still just as miserable. She was crying inconsolably for at least 4 hours per day, and up to 10. I’m not going to lie, the days were rough.

While I agreed with the reflux diagnosis, I was unsettled about the feeding issues. Our other babies had reflux but did not gulp air and choke while eating.  I was convinced she could be happy if she could stop sucking air and having the acid be forced back up again.

Two more pediatricians assessed our baby for reflux and were asked about tongue and lip ties. One dismissed us, but our primary care provider agreed there was a ‘slight’ tongue tie. However, in her experience, it would not cause issues. She recommended we see the clinic lactation consultant.

The lactation consultant was by far the most knowledgeable about ties and feeding issues. She also agreed there was a tongue tie, but did not know of any doctor who would cut a tie. Instead, she focused on helping moms work with it. By the end of our almost hour-long appointment, she thought the excessive air intake was due to over-supply of milk rather than anatomy. She gave me many helpful tips and we put all into practice. We tried bottles. No difference. We incorporated all her adjustments.

The clicking noise continued, as did the consumption of air.

Our daughter was now 9 weeks old, taking the highest dose of Zantac, and miserable. She cried the majority of the day and needed to be held for all naps. Baby wearing was a necessity, but even then, she was still crying.  They switched reflux medication to Prevacid. We gave it two weeks to see if it took her pain away.

She was still miserable. The pediatrician told us she had colic and there was nothing else they could do.

Desperate, I asked questions on the Reflux Rebels Facebook page. They referred me to the  Tongue Tie Lip Tie Babies Support Group. I posted pictures of my daughter’s suspected lip tie and tongue.

beforelip-tie

The comments agreed she should be assessed by a recommended provider in my area who not only assesses ties but also corrects them. They gave me a list of ENTs and Pediatric Dentists.

We chose a pediatric dentist because they use a laser for the procedure. This means the wound heals easier, baby experiences less pain, and there is no bleeding during the procedure so they can see better and have higher precision. For us, there was no question between a laser and someone using scissors and trying to see through bleeding as they cut inside our baby’s mouth.

I expected to have to wait weeks to get in. But a provider 15 minutes away got us in the same week. Confident with our daughter’s symptoms and the lack of effective treatment using medication, my husband and I agreed if the dentist confirmed ties, we would have her do the procedure in the office that day. We were surprised to learn our family dental insurance covered the procedure.

There was much anticipation leading up to the appointment. I was nervous and prayed for clear answers. Was I crazy? Everyone told us this was no big deal. Was I just making it up to give our baby’s colic and uncontrolled reflux a reason? Was this just me trying to fix something that would only resolve with time? Yet, I was excited to know for sure if I just needed to let it go, or if this needed to be fixed, once and for all.

The appointment was covered in prayer by many.

My husband and I took our daughter to the appointment and prayed outside in the car before going in. We had complete peace going in and were in agreement.

The dentist was knowledgeable and frank with us. Our daughter had a level 2 tongue tie. There are 4 types with 1 being the worse – where the frenulum connects to the very tip of the tongue. Our daughter’s tie connected to just behind the tip and was really quite pronounced. The heart-shaped tongue was evidence of how strongly it was being tethered down. This type of tie could cause speech issues, dental issues and is known to cause feeding issues with symptoms we were seeing. Basically, when the tongue is tied down, it cannot do the two things it needs to do when nursing – control the flow, and create an air-tight seal. She could do one or the other. This meant she either choked or gulped air.

The dentist recommended correction without hesitation.

In addition, our daughter did have a lip tie. It was restrictive when nursing, causing her upper lip to be unable to flange outward. However, from the dental perspective, she did not think it would cause dental issues. She the decision to correct it up to us. She did confirm that sometimes, families came back to have it done because the tongue correction did not resolve feeding issues. We decided to have both corrected to prevent the possibility of putting her through two separate procedures and recovery periods.

The procedures took 5 minutes. The dentist used Novocaine to numb her tongue and lip because she was a little older and her tongue tie was described as ‘quite thick’. She came back wide-eyed but calm.

Did it work?

It sure did! Our very first feeding at home (while she was still numb) was a perfect, click-free latch and she did not gulp air. She was still numb but we knew she could do it.  After that first feeding, it took several weeks to correct old habits and for her to heal from the procedures. Her latch for the first week or two while healing was still loose and she gulped air, but not quite as much. When we knew she wasn’t hurting any more, I started breaking the latch until we got it right during feedings. It took a couple weeks to re-learn how to nurse with her now ‘free’ tongue and lip. We did ‘stretches’ on the tongue and lip for 4 weeks to prevent reattachment (the mouth heals very quickly). Once she could eat without choking or gulping air, the reflux medication finally seemed to work – it controlled her reflux and she was happy. We did try to wean her off of the medication but it was evident she needed it. We’ll try again later.

Today, she has reflux, requires medication, but no longer is in pain and her reflux would be called ‘controlled’.

Many doctors and even lactation consultants don’t know what to do with tongue ties or lip ties in infants. We found some doctors really had no experience with ties of any kind and had no idea what to look for, or how to assess them. Others were aware of ties even agreed our daughter had one, but grossly underestimated the severity. Most who agreed there was a tie were reluctant to admit it could contribute to reflux symptoms. That said, finding a doctor willing to DO something about our baby’s ties was a difficult task.

If you suspect your baby has a tongue tie, I strongly suggest you follow through and find someone who is trained to assess the ties and correct them if advised to do so. If you just have questions, the first place I’d start is on the Tongue Tie Lip Tie Babies Support Group. Their list of providers is helpful and you can ask there if anyone has seen the specific provider you are considering. You can also ask about others experiences with the procedures and see pictures of what it looked like for their children.

For our baby, tongue and lip ties mattered – while they did not cause reflux, they made it uncontrollable with medication. The correction procedure literally changed our baby’s colic to calm in 5 minutes and the recovery was no worse than teething symptoms.

Here’s our daughter, a few weeks after the procedure, with a tongue that is no longer heart-shaped. Happy, with controlled reflux.

Worth it.

now

 

Advertisements

Infant Silent Reflux is NOT Silent – Our Experience Navigating Reflux Treatment

Infant 'Silent' Reflux is NOT Silent - Our Experience Navigating Reflux Treatment | thisgratefulmama.com

This is the second post in a series on Infant Silent Reflux. Before reading this, it will be helpful to read about Our Search For An Answer To Our Baby’s Cries, which explains what Silent Reflux is, and our path to diagnosis.

The only thing I’ll repeat from the previous post is this – Let me be clear: This article is not a complaint about that first year. This is how life was for our family. I write this to share with other parents whose children also hurt.  Sharing our experience has two purposes: to help hurting children, and to give encouragement to their parents. It takes a village…

Doctors diagnosed our son with silent reflux at 7 weeks. The pain had a name that made no sense – Infant Silent Reflux is NOT silent.

Once diagnosed, the first treatment step was medication. We started Zantac (Ranitidine).  A clear, strongly peppermint flavored liquid that made me sure he would hate peppermint forever. Every dose was a battle – it was almost impossible to get him to swallow it, no matter how many times I blew on his face or how loud he cried.

We saw mediocre results. With painful reflux symptoms causing all night crying from day 1, and treatment not beginning until week 7, it was like throwing a bucket of water on a forest fire. He still had all the same symptoms mentioned in the previous post but the medication seemed to take the edge off and feedings were a little more manageable at night. At least, for a little while – Zantac dosage and effectiveness is weight-dependent, so after a couple of weeks, it stopped working because he was growing so fast.

Our doctor recommended changing my diet to see if we saw additional improvement. I kept a food journal. I stopped eating all dairy (yogurt, cheese, milk, you name it), and anything citrus or acidic (tomatoes, oranges, berries, peppers, etc.). We saw what we thought to be limited and gradual improvement, but when I tried to add these foods back into my diet, he got worse. It was clear that my diet, dairy especially, mattered. So, I refrained from eating quite a few things for a year. I learned later that dairy takes a very long time to leave your system and even longer to leave theirs. If dairy is adding to the symptoms, you may not see marked improvement for a month. If you suspect it – cut it for 4 weeks and then see what happens when you add it back in.

A quick note about Zantac before continuing: Most of your stories will end with Zantac: A couple of years later when our daughter showed symptoms of reflux at 4 weeks, we knew exactly what it was. We took her in right away and the doctor agreed. She was on Zantac a short time, and it was enough to allow healing and the muscles to tighten and prevent further damage. She has never struggled with reflux again and will be 2 in March. From the families we know who have struggled with reflux, very few children go on to need additional medication, and most are entirely off of all medication by the age of 6 months. Of approximately 30 families we’ve talked to so far, I know of only 4 who have continued medication through 1 year, and know of only two other families whose children have had reflux as a toddler like our son.

I wish I could say that Zantac and modifying our diet was the end of our son’s story with reflux, but it isn’t. We continued monitoring my diet and increasing his Zantac dose as needed until the week before I had to go back to work (11 weeks).

Then things got crazy.

The reflux was out-of-control. The crying was unstoppable. The Zantac dose was maxed out. They wanted to switch him to Prilosec suspension (Omeprazole). We weren’t real excited about giving him more medicine since the first didn’t seem to help much. The doctor explained that while Zantac is a histimine-2 blocker, Prilosec is a proton-pump inhibitor. Both reduce acid produced by the stomach, but through different mechanisms in the body. In our doctor’s words, if a person doesn’t respond to Zantac, they often respond better to Prilosec. It gave us hope and we were willing to give it a shot.

The medicine tasted like chalk (so, of course, he didn’t like it). He was supposed to improve measurably after one week on the medication.

He did not.

My first week back to work, my husband and our family took turns watching him during the day. Our son wore those loving arms (and backs) out! He was supposed to start daycare the following week…now what? We were terrified to leave him with someone else, and terrified for the provider who would have not only him, but a handful of other children needing her attention. There was no way a daycare provider would be able to handle him along with the other children in her care.

We took him back to the doctor. He had an upper GI. As he choked down the barium, it was confirmed he had reflux but no physical twist, turn, or abnormality requiring surgery. Good news, but there was no indication as to WHY he had reflux. But, knowing reflux was present validated the reason we were pumping him full of the max dose of reflux medication.

On the way home from the upper GI, I refilled his Omeprazole prescription. I was shocked when given a completely different looking liquid, with different labeling than the last bottle; same medication name, but different consistency, color, and storage conditions. It still tasted like chalk, but the new bottle worked far better. Right away.

The daytime became manageable.

I took the remainder of the first bottle and the new bottle back to the pharmacy and spoke with a pharmacist. They admitted the first bottle should have had the same labeling as the new bottle, but would not admit it was made incorrectly. Honestly, to this day I have no idea if it was even the right medication in the bottle or not. I now ask plenty of questions when I pick up medication at the pharmacy – there is no guarantee the medication you receive is correct (how scary is that?).

We switched pharmacies and filed a complaint at both the local and corporate level.

At 13 weeks, our son went to daycare. We were blessed beyond measure by an experienced, patient and kind woman. He was loved, well cared for, and she never complained that he was difficult.  Not once. No words can ever express my gratitude to her for how she cared for him. She would tell me, in a matter-of-fact-way how he had done each day, never with any indication that she was burdened by him when he had a rough day. And he had plenty of rough days.

Although the Omeprazole, correctly made, worked leaps and bounds better than that first bottle, we noticed that towards the end of every bottle, our son’s symptoms were worse. Then, every time we opened a fresh bottle, the medication seemed to work better. After tracking it closely, it seemed like our 30 day supply worked great for 2 weeks, then gradually decreased in effectiveness over the next 2 weeks.

As a biochemist, I am familiar with stability testing. I suspected a stability issue and asked the (new) pharmacist about it. She said it should be stable, but if he was on the edge of the dosage, we might see a gradual decrease over time. She was willing to break our prescription into two, as an experiment. We paid up front for a full 30 day supply, but she gave us half of the volume. 15 days later, we then picked up a freshly prepared bottle, with the remaining volume from the 30 day prescription.

Breaking the 30 day supply of Omeprazole into two fresh bottles showed measurable improvement. We know of at least 4 other families who have seen symptoms increase over the course of a 30 day bottle who have also switched to a 15 day supply. While our evidence of a stability problem is purely anecdotal, it has helped more than just our child. Our pharmacist could not continue breaking it into two because of billing issues since the prescription was written for 30 days. She suggested we get a 15 day supply prescription from the doctor. We were happy to pay double the co-pays for mediation that actually worked well the whole time.

And so we continued on. While the days were going well, night-time was another story. From 8 pm until morning, it was hard. I’ll describe the nights in a post dedicated to sleep in coming weeks. In the meantime, if you are a sleep deprived parent of a hurting child, my heart goes out to you. I wrote a post when thinking about you, months ago. Sleep deprivation is serious business. You are not alone. Sleep did eventually come to our house. It will come to yours as well. Bless you.

While sleep eluded us for a long time, our son’s symptoms did gradually decrease over the course of the first year. Even though he didn’t sleep much at night, he screamed less and less, and with decreasing intensity as time went on. By 12 months, he slept through the night for the first time, and by 15 months we were able to wean him off of the medication and he eventually slept through the night.

Why was our son’s case so severe? I’ve asked several pediatricians, an allergist and a Gastroenterologist. No one knows for sure. But there are a few things they all agreed may have contributed:

  1. He had symptoms from day 1, which we learned is highly unusual. In fact, most doctors say babies don’t even have stomach acid at that point. I don’t know what this means, other than his case is different from others
  2. There were dietary issues we knew contributed (dairy, citrus), but there were more that we didn’t know about. At 15 months, we discovered an unknown peanut and cashew allergy (and he had a mama who was eating bucket loads of nuts and peanut butter while avoiding dairy while nursing…sigh…knowledge truly can be power)
  3. Since he had symptoms early but was growing fast (not failing to ‘thrive’), the doctors failed to treat the pain early, and we failed to persist in making them treat him
  4. He grew so fast and was treated so late, it seemed like we were always behind the proper dose of Zantac for his weight. It just wasn’t enough
  5. The Omeprazole first given to our son at 11 weeks was certainly stored improperly (room temperature vs. required refrigerated conditions that likely affected stability), and possibly made incorrectly to begin with. This means our son was basically un-medicated (or at least improperly medicated) at the point when his symptoms had peaked, requiring Omeprazole to be prescribed in the first place. I am convinced this snafu caused additional damage and lengthened his recovery. Add in the apparent stability issues with the 30 day supply and it wasn’t until 6 months before he was treated with full strength Omeprazole on a consistent basis.

Look for future posts that will describe our experiences with toddler reflux and reflux sleep (or lack-of). Also read about my personal experience nursing and caring for our son during his first year.

If you found this story to be like yours – don’t hesitate to get your child help. If you need more information sooner than the next post, email me (thisgratefulmama[at]gmail.com). I’m happy to share anything I know and help in any way I can.

Infant 'Silent' Reflux Is NOT Silent - Our Experience Navigating Reflux Treatment | thisgratefulmama.com

Infant Silent Reflux is NOT Silent – Our Search For An Answer To Our Baby’s Cries

Infant Silent Reflux is NOT Silent - Our Search For An Answer To Our Baby's Cries | thisgratefulmama.com

I think it’s time to do a little series on our experiences with infant and toddler reflux (GERD).

I’ve been shocked over the past few years by the number of people who have asked questions about our experience with our son and daughter. I rarely go more than a month without reflux coming up in a conversation, email, or phone call – because a beloved child is hurting.

These friends, family and acquaintances want answers. They need someone to validate their intuition that something just isn’t right. They want hope – someone to tell them that a doctor was able to help our child and will be able help theirs. They want to know what questions to ask.  Sometimes after we talk, the conclusion is that their child’s symptoms do not sound like reflux, but all-too-often, what is described sounds like reflux.

Regardless of the situation, I always point them towards going to their doctor. I am not a doctor. I can only share our experience and encourage you to get help for your child if you think something is wrong. Please check with a medical professional to confirm whatever you suspect.

When I started this blog, I thought reflux would be one of the first topics I’d write about. But in truth, I’ve held back on posting about our experience.

Why?

It’s complicated. It is painful to recall those moments when we could do nothing to console our hurting child. And because there is SO much information about our experience, it is hard to organize my thoughts. Oh, and it is hard to remember details out of the haze that was one year of severe sleep-deprivation.

But, most of all, I paused because I want to be sure what I write honors our son. Sometimes when I share with other parents, they tell me how sorry they are that he was a ‘difficult’ baby. But it wasn’t HIM that was difficult. What was difficult was that he HURT.

Sure, it was a hard first year for all of us. And he did cry. A lot…all night long, night after night.  But he was a beautiful, sweet baby boy. He just hurt. A hurting baby can’t help themselves so they express their pain through tears. Silent reflux is a terrible and painful thing. His whole body told a story of pain as it tensed, writhed, and screamed until his voice rattled and he had no air and was gasping for it.

But he was our baby, our son, an immense joy and blessing. He smiled, giggled, and talked – melting our hearts. It was just that those moments were less frequent and all-too-brief because they happened between bouts of pain. But those special moments were no less profound or fulfilling, and are cherished.

Let me be clear: This article is not a complaint about that first year. This is how life was for our family. I write this to share with other parents whose children also hurting.  Sharing our experience has two purposes: to help hurting children, and to give encouragement to their parents. It takes a village…

If you are reading this because your child is hurting, I hope this points you in the right direction. If this helps just ONE family, it has achieved its purpose. I hope this encourages you – whether your child has symptoms of reflux or another source of pain, know we understand what it means to care for a hurting child. I’m glad you’re here. Looking for answers is a great place to start helping your child.

Today’s post is our story of searching for an answer. Many of you have a similar story, only after diagnosis and starting medication, it will be the end of your story. The medication will reduce acid and help your child’s muscles heal and tighten. Your story will be short – I hope and pray it is! Our story did not end there. I will tell that part of our story at a later date, but sharing how we go to the point of identifying the problem will help the most people, so I’m starting here.

Our story:

We named our son Aiden. We loved that Aiden means “little fire”.  Never in our wildest dreams did we think he’d be born with a fire of acid in his belly that would cause him pain.

He screamed all night long, inconsolably, from the first night in the hospital, through most of the next 10 months. In the first weeks, it was my mom who observed that even when sleeping, he was never relaxed; his fists clenched, his back arched, and crying out in his sleep. Although he certainly had moments of calm, especially in the early morning when he hadn’t eaten yet, they were short and infrequent. And the older he got, the worse it got.

As a first time mom, I knew babies cried. But what did I know? Who was I to say that our child cried too much? It felt like it was saying he wasn’t good, or wasn’t normal, or that I wasn’t equipped to be his mom. At his one and two week appointments, I told his doctor I was concerned about how much he cried. But I was unsure of myself and my assessment – especially when my son was bafflingly calm EVERY time we entered the clinic. So weird! I didn’t go into detail, and didn’t really explain that he cried ALL night long, or that feedings were a disaster. I figured I was doing something wrong nursing him and that like all the moms told me…at some point soon, ‘it would click’.

Since Aiden was growing (99% on the growth chart the first 6 months), the doctor wasn’t concerned with how much he cried. He explained to me that some babies cry, a lot. Perhaps it was colic. He told me colic often has no explanation and goes away on its own after peaking at 6 weeks. I felt like he was telling me I was over-reacting. I doubted myself and didn’t press the issue.

But in reality, it was an understatement to say that we were concerned. Something did not seem right and I couldn’t accept there might not be an answer.

Night after night, at 3 am, as our child screamed in my arms, I cried with him. I prayed for help, for sleep, for healing, for silence. I was his mother, helpless to soothe him, even with nursing. During the day, he wanted to nurse endlessly; he would have nursed for 10 months straight if that was possible for either of us. I learned later that he was self-medicating; soothing his throat from burning. At night, nursing was different. Frantic. He would be desperate to eat, only to push away and scream, writhing in pain. It was awful for him. And for me. Most night nursing sessions took hours. My poor husband would find us both crying in an actual puddle. He would graciously and lovingly scoop him out of my arms and take a shift pacing the house.

The nights were LONG.

No amount of walking, rocking, singing, shushing, dancing, swaying, swinging, swaddling, or standing still made a difference. The only thing that seemed to give him pause was what I’d call the deep squat. UP, down, UP, down, UP, down…I did more squats after giving birth than I have my entire life. And so did my husband. Squats would soothe him for a while as he’d look at us, wide-eyed…but as our legs, and back and arms gave out, so did the silence.

Not a really viable solution – you can only do so many squats.

I researched all kinds of causes of colic. I remembered a co-worker mentioning their child had acid mild reflux and required medication. I had never had heartburn, so it was hard for me to understand how it could be this painful. And, he never spit up – ever! But I remembered stories of adults with heartburn thinking they were having a heart attack and spending the night in the ER. When I first experienced heartburn during my second pregnancy, I realized just how awful my son felt for that entire year. It broke my heart all over again.

I researched colic, hoping to find a reason for his cries, and was often pointed towards infant reflux. But almost all references to infant reflux symptoms at that time noted that babies with reflux refused to eat and lost weight, causing failure to thrive. Our son didn’t spit up. At the time, I didn’t understand that at night as we struggled with nursing, he was refusing to eat.

Information on silent reflux wasn’t really out there – or at least, I couldn’t find it.

Finally, I found one mom’s account of her son. Their story echoed our own (I wish I could find it to thank her!). Her son, like ours, was not failing to thrive, and was also bafflingly calm in the clinic. After refusing to accept his symptoms were colic and could not be explained, she took him to other doctors and found someone who agreed with her. They diagnosed him with silent reflux. I had never heard of it.

Silent reflux is when your child has acid reflux but never spits up. Acid comes up from the stomach because the sphincter muscle at the top isn’t strong enough to close tightly. But what makes it ‘silent’ is that instead of spitting it up, they swallow it. It burns coming up and going back down. A lot. A baby should be content after they eat, but with silent reflux, it brings pain. They arch their back, throw their heads back and clench their fists – without relief. Some babies refuse to eat while others want to nurse slowly all day long.

Let’s get something straight before describing how you can identify reflux that is painful: All babies have reflux to some degree. Your child may have gurgly burps or spit up a lot but this doesn’t mean you need to be concerned. What matters is whether it hurts them.

Although most literature says a baby can’t have acid reflux right away because they don’t have stomach acid yet, our son’s symptoms were the same on day 1 as at 7 weeks, only at 7 weeks they were worse. Much worse.

Our sons’ symptoms of painful silent reflux included:

  • excessive crying that was worse at night. A whole body cry – red in the face, voice rattling, gasping for air
  • basically never slept or slept for only 40 minutes of fitful sleep at a time (there will be a separate post dedicated to our experience with reflux baby sleep)
  • would cry out in pain during sleep, especially after eating
  • repeated hiccups – not just a nuisance, they were obviously painful and would last forever. My daughter had hiccups too, but not like these. They were vicious
  • audible gurgling in his throat, followed often by red-faced coughing fits or sound of clearing his throat
  • body always tense, fists clenched
  • not content after eating, often with back arched and screaming in pain
  • during the day, wanted to nurse constantly (self-soothing) but never seemed satisfied
  • at night, frantic to nurse, only to pull back in pain and scream, then be frantic to nurse again (frantic to eat to eat, starting to eat, refusing to eat, repeat). This is the ONE repeated symptom that I’ve heard the most from other parents
  • diapers were not normal – runny, greenish, acidic (we did not know this at the time – we had no idea what a normal newborn diaper looked like until my daughter was born)

That mom’s story gave me the motivation to keep hunting for an answer. Her words gave us confidence to demand a response from the doctor and to describe, in detail, EVERYTHING that was happening. It took countless phone calls to nurses and lactation specialists, doctor visits, and finally nursing him in the clinic with a lactation specialist to diagnose him. It took the lactation specialist less than 5 minutes to figure out what was going on after our son finished eating and began writhing in pain (if you think your child has reflux and have trouble getting someone to agree, I’d reach out to the lactation specialist at your pediatrician’s office).

They diagnosed him with silent reflux at 7 weeks.

The pain had a name that made no sense – Infant Silent Reflux is NOT silent.

Read more about our experience navigating reflux treatmentmy personal experience nursing and caring for our son during his first year. and look for future posts that will describe our experiences with toddler reflux and reflux sleep (or lack-of). If you found this story to be like yours – don’t hesitate to get your child help. If you need more information sooner than the next post, email me (thisgratefulmama[at]gmail.com). I’m happy to share anything I know and help in any way I can.

Infant 'Silent' Reflux Is NOT Silent - Our Search For An Answer To Our Baby's Cries | thisgratefulmama.com