It’s Not Just Colic: Dealing with Infant Reflux, Milk/Soy Protein Intolerance (MSPI) & Other GI Issues


Posted 7.15.10 | Guest Blogger


Our post today is a guest blog entry from Brittney, one of the founders of the Reflux Rebels, a support group for parents of children with reflux, MSPI and other GI issues. You can also find the Reflux Rebels on BabyCenter, where they have an active group of over 1,800 parents. We’d like to thank her for guest blogging for us.

I'm Brittney, a stay-at-home-mom to three beautiful kids; 2 bouncing, beautiful girls and a sweet baby boy.

My journey with infant reflux and severe food allergies started when our second daughter, Elliott (Ellie), was born. Ellie immediately started with symptoms of what I now know as reflux and Milk/Soy Protein Intolerance (MSPI) (for Ellie, her reflux was a by-product of her untreated MSPI and various food allergies).

In the hospital she appeared to be a normal newborn. She was a little “spitty” but nothing that struck us as odd. She only had one bowel movement in the hospital and thus began our journey to what seemed like hell and back. When Ellie was four days old we went to the new pediatrician because her belly was distended, she hadn't had a bowel movement since we left the hospital, and she was visibly in pain. We were told to put her on soy formula (which our first daughter was successful with) and to try a few home remedies to relieve her constipation.

In the midst of the formula change and adjusting to life with a newborn again, symptoms of severe reflux appeared. Ellie went from screaming for a few hours a day off and on to screaming bloody murder for hours on end. In desperation, we went back and forth to the pediatrician begging for help and answers. We were told countless things. She just has colic... She'll outgrow it... Try some cereal... etc., etc.

We were put on medications such as Axid, Zantac, Erythromycin, Prevacid capsules, and Prevacid Solutabs. Finally one night after Ellie screamed for 22 hours straight and the pediatric nurse assuring me she just had “colic”, we made the decision to go back to our previous pediatrician across the state line. The next morning we were seen by our current, open-minded (and amazing!) pediatrician and have never looked back. Ellie was started on 30mg of Nexium a day and switched to Neocate, an elemental formula for kids with severe food allergies.

Throughout the following months, Ellie underwent countless procedures, x-rays, blood draws, ultrasounds, and doctors’ visits to get her condition under control. We trialed and failed food after food after food with her. We were told all of those common myths by the GI and the only thing we were left with was frustration and a daughter completely and utterly miserable. After a few months of being on the Nexium and Neocate combination, things started to look up. By a year she was a new baby and now, at 2, I don't even recognize the once miserable baby she was. She brings such joy to our home!

When our third child, Cohen, was born, I noticed his bowel movements were filled with mucous (a tell-tale sign of a milk intolerance). I immediately cut all dairy from my diet. A week or two later I cut all forms of soy. Like Ellie, while we were trying to get his milk situation under control, I noticed reflux starting to creep its way in (both a mechanical issue and an MSPI by-product for Cohen). We wasted no time and went back to our pediatrician to get him a proper PPI (30mg of Nexium also) at MARCI-kids dosing standards. After 7 weeks of continuously mucousy and bloody stools, the decision was made to also put Cohen on Neocate. Within two weeks of being on the Neocate and Nexium combo, he was good as gold and within 6 weeks, his stools were perfect! He's a happy, healthy, BIG, 7 month old now. He's the perfect (and final!) addition for us!

Why all the details?, you ask. I share the details with you to let you know that I can relate. I have been there and done it all.

  • I've dealt with the horrible doctors and the nurses who act like you're insane.
  • I've been there with the screaming, inconsolable infant.
  • I've been there fighting with the insurance to cover this particular test and that particular medication.
  • I have been there fighting with my spouse because of all the tension having a GERDling and allergy baby brings.

I have been there. And now I want to be there for you. Our group, and The Reflux Rebels website, was created out of our desire to see no parent, family member, and infant have to suffer like ours have. We hope that you will find this information useful and informative.

And as always, know, It's not “just colic”

I, along with Lauren, created The Reflux Rebels in January of 2009. Since then it has grown to over 1,800 members. In late 2009, Lorelei and Kim joined us as co-owners of The Reflux Rebels. We are currently in the process of becoming a legal non-profit organization and strive to give back to our community and those in need.

- Brittney

Read Comments (11)

  • 2012-08-29 | Missy

    We’re in the same boat as you. My son has a milk and soy allergy and severe reflux. He’s been on Similac Alimentum but now that we’re approaching his first birthday, I’m wondering what kind of milk to switch him to. What did your kids drink as they got older??

  • 2014-03-12 | Melissa Vanderbeek

    I completely get this I am struggling through the MSPI and silent reflux with our 2 month old daughter. They began to realize after her getting RSV that she had reflux where 30 minutes after she eats and goes to sleep her oxygen levels were dropping. So they put her on Ranitidine and the next day they put her on omeprazole, then the next day they started her on caffeine and thickened formula. She seemed to be doing well until about 2 weeks after that she began to be very uncomfortable with eating. Her doctor had previously before the RSV put her on the Alimentum because her stools were like water and she grunted a lot with the formula and breast milk mixed to fatten her up because she was born early. Anyways after having her on the omeprazole and thickened formula she began to get uncomfortable with eating and would eat 2 ounces and then she would just cry and cry and you could hear her stomach just gurgling. So her dr decided to put her on Elecare. The 4 feedings went well but this last feeding you could hear her stomach gurgling again and she was grunting and seemed to be swallowing hard and coughing during eating. I don’t know what to do, because she is hungry but just not comfortable eating! I wish I could fix this all or at least maybe have a feeding evaluation done so someone else can watch her eat and see what happens.

  • 2014-03-13 | Rob

    Melissa,

    We’re sorry to hear you and your daughter have had such a rough first few months. We hear from a lot of families who go through similar journeys with formulas and meds for reflux. Most clinicians recommend trialing Neocate for up to 2-3 weeks to see most of the improvement, which isn’t typically immediate. For instance, if an infant’s reflux is related to cow milk allergy, once they start Neocate it takes time to clear milk or soy protein out of her system and time for the body’s tissues to heal. If you think that a feeding evaluation could be helpful, you may want to ask her doctor if a referral to a certified feeding specialist is a good idea.

  • 2016-08-26 | Kaitlynn

    I cried reading this. I live in Northern Alberta and knew something with my son wasn’t right from from day one. He screamed all day and night from the day he was born. He never napped. I had to go to emerge several times plus see my personal doctor (which takes 6 weeks minimum). My husband and I finally drove to a major city to go to the emergency at a children’s hospital 3 hrs away at 3:30 am where they put him on prevacid for severe reflux. It helped somewhat but he was always tired and never napped. Full of gas, and always seemed in pain and agitated. We finally got to see a pediatrician who put us on another formula and laxaday. He screamed for days. She suggested soy and it was a night and day difference. Unfortunately now he is struggling to go to bathroom and is agitated and I’m just praying we aren’t at square one again. It was 4 months of “you’re first time parents or he is just colicky”. He stayed up all day and night and we never slept. We just don’t want to go back to that.

  • 2017-04-17 | Carolyn

    Our Lorelei is struggling. She’s 12 weeks now and cries a majority of her awake time. She gets angry at feeding times and doesn’t want to eat. She only has bowel movements every 4-5 day and usually only with intervention. Our 6 yr old son has intolerance and allergies to milk and soy and so I’ve started eliminating those from my diet. I’m 5 days in and no improvements yet but I know it takes a while. I’m hoping this fixes the problem! So stressed from all the crying and I feel so bas for our little one.

  • 2017-08-01 | Shrette

    My son who is now 5 months has struggled with severe reflux. He has never been fussy but spits up in large amounts. I have tried soy formula which helped but he still has days of spitting up large amounts. The doctor put him on ranitidine 15mg but he still spits up in large amounts. I even tried nutramigen, but my son wont drink it at all. Are there any other formulas that work well.

  • 2017-08-02 | Nutrition Specialist

    Hi Shrette,
        We’re so sorry to hear your little guy is still struggling with reflux. Aside from Nutramigen, which is made with broken-down cow milk protein, there are amino acid-based formulas like Neocate. Neocate is made with amino acids instead of protein, which the body uses in the same way. Amino acids are the building blocks of protein and are too small for the immune system to recognize and react to, like in a typical allergic reaction.
        For some infants, reflux can be a sign of a milk allergy. If that’s the case for your son, Neocate might be able to help. In fact the medical guidelines for reflux in infants suggest trying a hypoallergenic formula like Neocate before trying prescription reflux medications. If you have any questions at all please give us a call at 1.800.Neocate (1.800.636.2283) - we’d be happy to discuss!
        Best of luck to you,
    Rob

  • 2017-09-02 | Samantha

    So, my second son was born on 8/4/17 and has struggled with formula from day one.  The hospital started him out on Gerber Good Start Gentle, which he projectile vomitted up in the hospital.  He had almost lost an entire pound in 2 days when we were discharged.  So, when we brought him home, we changed him to Similac Alimentum which is what worked for our first son.  2 days after that switch, he had his first pediatrician appt where his pediatrician switched him to Similac for Spit Up which was a thicker formula with rice starch to hold it down.  He done great the first week, and then he started comfort feeding, wanting to eat all the time even though he just ate, and then if you fed him, he would vomit.  So, we called the pediatrician who put him on Zantac for the reflux, and he told us to go back to the Alimentum.  So, we did.  We have been on the Alimentum for aproximately 3 weeks with minimum improvement.  Pediatrician switched his meds to Prevacid but they don’t seem to be helping either.  He no longer projectile vomits, but still spits up frequently.  He fusses most of the day with gas, and strains all day long.  He toots constantly and they are super loud and super smelly!  He can’t rest well, and neither can we.  We can’t lay him down to sleep as he chokes on his own spit up.  He sleeps in a rock n sleep because it is elevated but still struggles with coughing, and spitting up. So, we tried soy, but that caused him to get wheezy and congested, so, we are going back to the Alimentum.  Any other suggestions?  We are losing our minds listening to the crying, and as his mother, I just cry all the time because I can’t soothe him and the pediatrician just keeps saying he is colicky!  I have tried probiotic drops, and has drops every feeding.  Nothing helps, not even gripe water…..

  • 2017-09-04 | Nutrition Specialist

    Hi Samantha,
        We’re so sorry to hear about how much your family has had to deal with. It sure sounds like the symptoms your son experienced could be related to a cow milk allergy. Alimentum is a hypoallergenic formula made with broken down protein from cow milk - a hydrolyzed formula. For many infants with a cow milk allergy that type of formula resolves symptoms, but not for every baby, and sometimes it only partly resolves symptoms.
        When a formula like Alimentum doesn’t work, an amino acid-based formula like Neocate is the next step. It’s made with free amino acids, the building blocks of protein, which are too small to cause an allergic reaction. Many parents who’ve been through a situation similar to yours have told us that Neocate helped within a few days. For some infants with bad reflux as a result of a milk allergy the reflux with improve or even go away completely.
        Please discuss trialing an amino acid based-formula like Neocate with your son’s pediatrician right away. If he or she isn’t familiar with amino acid-based formulas, ask for a referral to a pediatric gastroenterologist. Also, medical guidelines do not advise using anti-reflux medications for infants, and a pediatric gastroenterologist will be the expert who can best decide what strategies to use for the reflux if a formula like Neocate doesn’t fully resolve it.
        Best of luck to you!
    Rob

  • 2017-11-19 | Katie

    Where can you get soy free formla? They all have some form of soy in it. Vegitable oil” We tried every formula and reflux medication, even neocate. Nothing’s has worked. As soon as I took her off all formula and put her on almond milk and soy free diet she stoped crying. She’s 13 months old with all day” colic” seriously?

  • 2017-11-20 | Nutrition Specialist

    Hi Katie,
        Thanks so much for your question! In the United States, NO Neocate products use soy oil, which is unique among formulas. The best thing to do would be to talk with your daughter’s healthcare team and ask what they recommend. And remember, most experts advise that it can take up to 2-3 weeks after switching to a new hypoallergenic formula to see the full improvement in symptoms related to food allergies.
        There’s also another reason to talk to your daughter’s healthcare team: almond drinks are NOT a suitable replacement for cow milk or a substitute formula, because they aren’t designed to provide the right nutrients. For toddlers with cow milk allergy, the guidance from experts is that a substitute formula (not a plant-based milk replacement) should be used AT LEAST until age 2 to help provide the right nutrition.
        Best of luck to you!
    Rob

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Food Allergy Living is a resource for parents of children with food allergies, brought to you by Nutricia, the makers of Neocate. For more in-depth information about our purpose & authors, see our About Food Allergy Living page.