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

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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