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 hurting.  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.

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15 thoughts on “Infant Silent Reflux is NOT Silent – Our Experience Navigating Reflux Treatment

  1. Pingback: Infant Silent Reflux is NOT Silent – Our Search For An Answer To Our Baby’s Cries | this grateful mama

  2. Hello ‘Thisgratefulmama’. I wish I had of found your blog when starting out on the Reflux journey as it would have been invaluable help to us. We too noticed the link between storage of liquid Omeprazole and the decrease of efficacy towards the end of the bottle. We were moved on to dissolving granules of Lansoprazole. Not the easiest thing to prepare and administer compared to the liquid Omeprazole but a lot more reliable.

    • I am amazed at how many people have observed the Omeprazole problems, and yet the pharmacy and doctors were resistant to agree it could even be possible! We were not given a different option but I am glad you were! Thank you for sharing!

  3. I wish I had found this sooner, my daughters journey is so similar & we’re only 5 months in! Things are getting better but I’m SCARED to start foods!

    • I understand – introducing anything new is scary. Just go slow and keep your eyes open. If anything doesn’t sit right, set it aside for a month or two and try again later (unless you suspect an allergy of course). Some foods bothered our son rght away (fortefied rice cereal was a disaster until 9 months so we made our own rice cereal from scratch and he tolerated that just fine). Remember you do not have to give them anything that makes reflux worse 🙂 Praying adding food HELPS her little system. Hang in there!

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  5. Pingback: Infant Silent Reflux is NOT Silent: My Experience Nursing and Caring for Our Hurting Son During His First Year | this grateful mama

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  7. Hello
    My daughter is also on omeprazole. She is on omeprazole first kit. I was told per manufacture that the stability is good for a long time. Was yours the first kit as well?

    • I’m not sure. We always received it in an amber bottle, not a kit. The pharmacist did tell me it was very stable but the paperwork said 30 days. Check the paperwork for stability info for the most accurate info.

  8. My baby will be 1 year after 1 month , im not sure anymore if what is going with him is silent reflux or not, when he was 4 month he had ph probe and showed 77 time refluxing during the 24 hours ! And the milk sometimes get out of his nose , Now he is on neocate milk , losec and zantac as medication , and few kinds of food but he is not comfort during the day , thanks god he sleeps better only woke up 2 or 3 times during night , before it was maybe 10 times or more ! He is irritable from meal to meal plus having constipation , saliva is becoming more and his tongue is always moving outside like he is chewing something or tasting but no food is there plus coughing sometimes and hoarsness before but now is better , if I put him on his stomach he will reflux , if I put him on his back I will hear the swallowing when I carry him or he will burp after being flat , , he puts his finger or hand inside as he wants to bring something ,I feel sorry for him he cant tell me whats going on only criea and doctors are careless and dont want to make baruim test for him coz they think it will not show anything as the ph showed the reflux , is that sound like silent reflux or theee r other issues ?! As a mum and as ur experince !? Am so tired with a baby who cries all the time and searching for answers as doctors r not helping . Thank u and sorry for my long msg

    • I’m so sorry you are not finding doctors to be helpful and that your little one is feeling so uncomfortable. All these things DO sound like silent reflux to me but I am not a doctor. Our son had similar symptoms and the coughing and hoarseness was a big indicator when we put him back on reflux meds at two and a half.

      The Barium swallow test was done for us to check that there were no anatomical abnormalities (described as twists or turns) in the esophagus-so the pH test confirms reflux and acid coming up but barium test looks for a reason. I wonder if asking that way might help the doctor see a need for it? We also had an upper endoscopy that ruled out EoE, lactose intolerance, a stomach bacteria, and a few other things and gave confidence to the doctor to increase and chance medications to something more aggressive.

      Can you see a different doctor? If so, I would keep seeing new ones until someone listens! Hang in there. We saw big improvement once our son walked-took the pressure off his tummy and strengthened core muscles. Keep hunting for answers if you are not satisfied. You are doing a great job and are the best mama for your baby.

      • Thank you for your support and your kind words gratefulmama , can I ask you when did u make the endoscopy for him ? And what are the medications he used to take ? Mine on losec and zantac and he is always moving his tongue and mouth like he is chewing or tasting something that’s what makes me going crazy.
        His doctor telling me if he has any ubnormalities he would vomit not having a silent reflux , but I’m going to push to make it soon .
        Doctors are not that familiar with these conditions . Hope I will have answers soon
        Thank you dear and I will update

      • You are welcome. Happy to help if I can, even if it’s just encouraging that you are not alone!

        We did the endoscopy at 2.5 years when reflux returned. He was in Zantac for a while then omeprazole compound. We also did infant probiotics for a long stretch. Medicine never fully controlled reflux for us but did take the edge off. Our son seemed like stuff came up often too and I felt so bad for him. Poor little ones. Would help if they could tell the doctors themselves!

        I’d recommend taking video of symptoms the doctor isn’t understanding so you can SHOW them if you haven’t already. Sometimes video is better than our words.

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