Infant ‘Silent’ Reflux is NOT Silent: 5 Survival Tips for Parents

Infant 'Silent' Reflux is NOT Silent: 5 Survival Tips for Parents | thisgratefulmama.com

1. MAKE Time For Sleep

Duh-this may seem like a no-brainer if you haven’t had a hurting baby. But our baby hurt, and could not sleep. We rarely slept more than 4 hours per night, and those were non-consecutive 40 minute spurts. Sleep broken up like that is not restorative. As days months pass, the need for any solid chunk of sleep becomes desperate.

Here are a few ideas to schedule sleep:

  • Trade off – one parent goes to bed early while the other takes the evening shift. Take turns during the week.
    • If your child cries most of the night, use a loud fan, ear plugs or noise machine to block the noise so you CAN sleep while the other parent is awake.
  • If you are a working parent, allow yourself one day a week to go home and sleep for an hour or two before picking your child up from daycare.
    • If daycare isn’t a possible outlet for you, ask a trusted family member or friend to come hold the baby while you sleep. And when they come, don’t do anything else. Just sleep.
  • Do whatever it takes to help your child sleep – I held our son on my chest in a big chair with pillows propping my arms up so he couldn’t fall for his first 3 months of ‘sleep’.

2. See a specialist

No matter how good your pediatrician is, see a specialist. A pediatric Gastroenterologist (GI) just knows more because of their specialized training. They see more cases of severe reflux than a pediatrician and have resources and ideas even the best pediatrician may not.

3. Be Honest and Transparent

While no one wants to complain about their child, it is not complaining to admit or explain what is really going on. Take time to explain why you can’t volunteer, go to an event, or why you might be late or need to leave early. Being open and honest will help others understand, give grace, and even offer to help. People who don’t know you need help will not offer to help.

Another reason to be open and honest is that sharing your experience will add a new level of authenticity and trust in your relationships. You may be surprised which relationships thrive in this time and which ones do not – true friendships are forged in fire. These are the people who walk through struggles with you. Life isn’t perfect and we shouldn’t pretend it is – don’t be afraid to share the hard stuff.

4. Seek Experienced Reflux Parents

In addition to a great pediatrician and GI specialist, others have been in these trenches before you. They have spent their days and nights loving and doing everything they can to not only soothe their child, but also to learn how to do it better. As a mom who has gone through what you are going through now three times – I know the advice and encouragement from seasoned veterans is invaluable. If you don’t know any such moms, here’s a few resources that may help:

5. Pray and Then Pray Some More

In the middle of the night, all day long, when your ears, back and arms hurt from rocking and soothing the screaming, prayer is your lifeline to the God of all creation. He made you, your baby, and He knows exactly how hard this is for all of you.

He listens, He answers, and He equips. Reach out to Him for strength, comfort, and peace.

I recently studied John 11 and was so moved by Jesus’ compassion and how deeply troubled He was over the death of Lazarus. He comforted Lazarus’ sisters Mary and Martha and wept beside Lazarus’ grave. Even though death had to happen for Him to show His power over death as He raised Lazarus from the grave, He took NO joy in seeing the sorrow of those He loved. And, He felt His own sorrow over the situation. Cry out to Him, He hears you. He is your help and holds you both in His good, sovereign hands when there is simply nothing else you can do for your child.

On my bed I remember you;
    I think of you through the watches of the night.
Because you are my help,
    I sing in the shadow of your wings.
I cling to you;
    your right hand upholds me.
Psalm 63:6-8 (NIV)

Infant 'Silent' Reflux Is NOT Silent - 5 Survival Tips for Parents | thisgratefulmama.com Infant 'Silent' Reflux Is NOT Silent | thisgratefulmama.com

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Infant Silent Reflux Is Not Silent – 10 Survival Tips for Parents When Your Child Does NOT Sleep

Infant Silent Reflux Is Not Silent - 10 Survival Tips for Parents When Your Child Does NOT Sleep | thisgratefulmama.com

There are infants who sleep through the night right away, or even within a few months of bringing them home from the hospital.

We were not that family.

Read more about our experience with infant reflux:

As I’ve shared before, our firstborn had silent reflux. Acid burning, pain abounding…heartburn. In our experience, reflux is worse at night, and greatly affected his and our sleep.

When many parents say they had a hard night, it means the child was up a few times, perhaps staying awake for a (whole) hour, or that perhaps they were up at 4 am for the day. Let me be clear that I am not diminishing how this feels in the morning – tired is tired! But I think it is fairly safe to say most babies and parents manage one solid 2-4 hour stretch of sleep per night, most nights. They are tired, but are usually functional the next day.

When I say we had hard nights, I mean that most nights, he did not sleep. There were 3-5 hours stretches of crying and discomfort followed by a 40-minute nap. But even this short stretch was interrupted by writhing and painful screams.Then we repeated the crying and short nap, or he was up for the day. He did not sleep a 3-hour stretch until 10 months.

As his nursing mama, neither did I. And often, neither did my husband.

We tried everything. We held him, we tried walking, co-sleeping, swinging, bouncing, singing. In desperation we tried crying it out but it was short-lived and agonizing for mom and baby  – a hurting baby cannot self-soothe, nor should he have to.

Nothing worked.

We spoke to doctors, lactation specialists, other parents and read books, articles and blogs by sleep consultants. There were many great tips, but none helped our son sleep.

If you think that sleep-deprivation is hard on your body and mind, imagine how it affects a baby – they are supposed to sleep twice as much as we are!

He, and we were exhausted – a term I no longer use lightly.

After 10 months, his sleep ebbed and flowed along with his silent reflux symptoms until FINALLY at 15 months, he slept through the night. This too came and went, but his sleep generally improved so MOST nights were silent nights.

That is, until the reflux returned with vengeance when he was 2 1/2 and I was 7 months pregnant with our second baby. Then his sleep success derailed and we recognized old patterns of returning pain and chronic coughing. This was no sleep ‘regression’. It was sleep succession. But we will save the story of toddler reflux for another day…

Because our sleep experience was a struggle, my goal is to share how to survive – to endure, to wait for healing, and to do everything in your power to encourage sleep. But more importantly, my goal is to empathize, and encourage parents that sleep does come, even if not right away.

10 Survival Tips for Parents – When Your Child Does NOT Sleep

1. Schedule YOUR sleep

While parents may not need as much sleep as a newborn, they do need consistent sleep. When your child doesn’t sleep, sleeping when the baby sleep doesn’t work. Consistent sleep-deprivation has consequences. Parents need to make their own sleep a priority. Be creative. When our son was young, I worked. Some days I went home and slept for 2 hours before picking our son up from daycare. OR, I’d work a few longer days, and take off early on a slow day and sleep for (gasp) 3 hours! If you don’t have daycare as an option, read on…

2. Enlist help

While not all parents have volunteers to stay up at night with the baby so the parents can sleep, most have someone who will come during the day. Ask for help. And accept it when it is offered. Don’t be prideful. Don’t shrug it off. Sleep is necessary and important. Ask them to come over and snuggle your child. Be sure they understand your child might cry the whole time. Our son’s grandparents, aunts and uncles and our close friends were willing. We weren’t good at asking.

3. Be transparent

Nothing good will come from pretending everything is fine. Don’t sugar coat what is going on. While there is a fine line between explaining the facts and complaining, if you aren’t truthful and transparent, your sleep-less existence will be lonely, and without help. And, others will not understand why you suddenly traded your social life for sleep.

4. Request advice from professionals

Assuming you are already navigating reflux treatment, don’t neglect to see lack of sleep as a symptom that needs to be addressed. When sleep is this difficult, more than just a pediatrician may be needed. Request a consult with a GI doctor, ask for a sleep study, or meet with an occupational or sleep therapist.

5. Try new strategies

I cannot advocate the ‘cry it out’ method because we learned that a hurting baby cannot self-soothe. They hurt and need help. However, there are many other great options to try. It is a good idea to try different sleep positions, but instead of buying a bunch of rockers, swings, crib wedges or chairs, borrow them. Research them. We used a Nap Nanny (no longer sold, but this Dex DayDreamer™ Infant Sleeper is today’s equivalent product) with an angled back to help with reflux. It was the only place our son ever slept at all for most of the first year. Please note: the most important comment on these sleepers is to never place them in a crib. They are intended to use on the floor for baby’s safety. 

6. Join a support group

Did you know there are GERD support groups all over the world? You can find the Reflux Rebels or Reflux Support Group on Facebook. The Facebook groups are generally closed, which means only group members can see your posts. You will find people struggling with the same issues, encouragement, and wise advice from real-life experience.

7. Don’t wake the baby

If your baby does not sleep, DO NOT interrupt sleep for any reason. The theory that sleep begets sleep is true in our experience. There is no event more important than your child’s sleep if they NEVER sleep. Do your best to set conditions for sleep and then protect that schedule. If that means leaving early, coming late, or not attending something, SO BE IT.

8. Pray

The best comfort I found during this time was prayer. And scripture. It is no surprise to God that you are tired or struggling. He sees your child and He sees you. Let Him carry you, and trust that He will bring both healing and sleep in His time. AND, know that your struggle has purpose, even if you cannot see it yet. Trust His plan, purpose and promise that He is working in all things for good of those who love Him…

9. Hang on to hope

Our son struggled for much longer than we wanted him to. And there were days we thought he would never, ever sleep through the night. But he did. And now he sleeps hard, and well. Eventually, even your child will too.

10. Know you are not alone

Other moms have endured what you are enduring. Find them. They won’t waste your time with advice that won’t work, they’ll instead spend their time listening and encouraging. They will understand that not all problems can be fixed with a book, herbal remedy, fancy swing or sleep-training method and they will remind you that some problems  have to resolve with time.

 

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 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.