We have had so many questions about reflux and digestive issues in babies on the Mommy Stories Facebook group page recently and two amazing mommas seem to be our "resident go-to moms," diligently answering questions and sharing their experiences with fellow moms. I have learned that reflux is definitely more common than I ever knew about. To make the road a little easier to travel I asked a couple moms to answer some questions about what others can expect and some possible solutions. We will have more posts about this topic coming soon. Hope this helps!
Thank you to Tina Nightingale for answering these questions!
(This made me cry imagining the struggle this mom went through! Read on for a very heartfelt, true account of what it's like to have a baby with digestive issues.)
Before engaging in answering reflux questions I just want to add that there are no questions that will stump me when it comes to reflux and milk protein intolerance I know pretty much EVERYTHING there is to know. However there are many different approaches to managing this difficult diagnosis. Like everything else when raising children you have to find what works best for your baby. Keep in mind that not all babies with reflux are miserable and unhappy, some babies are what we call “happy spitters.” Reflux affects each individual child in different ways and at different levels. I am simply speaking from my experience.
What is reflux like?
I wish I could sum up in one word what my journey through reflux represents but it is impossible unless you’ve been there to fully appreciate and comprehend what reflux means to us mom’s who are survivors of GERD. When my daughter was 3 months old I was given a short glimpse of what having a “normal” baby should be like … needless to say it didn’t last long. Hopelessness, frustration, anger, eagerness, selflessness, love, protectiveness are the words at the top of my list for how reflux made me feel. Bottom line I wanted my children “to be at peace” that is all I wanted … sounds simple doesn’t it?
What is this thing?
It is not without many hours of reading, e-mailing, questioning, demanding, crying, and screaming (at nurses yes I did) … that I was able to discover how strong I am and exactly what I needed to do for my children. I NEEDED TO BE HEARD AND LISTENNED TO. I required no less from my doctor than what I was asking him to do. I wish I could say I had a wonderful pediatrician but in retrospect he was awful.
A lonely road.
I am the one who did the research, I reached out to specialists in this field, I spent countless hours trying to find what works for my babies … their pediatrician simply followed my lead. I needed someone to be there with me, someone who understood, and could help me. I had no one. To this day my heart aches for mommies who have reflux babies because I know how lonely it can get.
On the other hand I celebrate the intimate relationship I have with my children … I believe that having a reflux baby makes you much more attuned to EVERYTHING. I developed an intuition I could have never reached … with this sense of deep intuition I got to know my children at a deeper level … and that deepness has reached places that are unimaginable and dream like. My children mean the world to me … they are my everything.
I hope that my challenges can bring closure to yours and help you through this journey full of obstacles.
1. How did you first know something was wrong with your baby's eating?
Both my kids were different when it came to reflux.
My son was a spitter, grunted, and seemed to always be straining. He did this from the time he was born. He was an awful sleeper and never was content unless I held him. He would cry for hours arching his back and bringing his little legs up to his belly. It would take him 1 hour to drink 1 oz of formula and he would drink every 2 hours … you do the math. This was not normal … I knew that … everybody knew that but everyone just said well maybe that is just who he is … really as you read this statement does that sound RIGHT TO YOU!!!! Hummm NO right! I can’t remember how many times I was asked if he was my first baby? When I would say yes the typical response was silence accompanied with a simple smile. I learned quickly that this was people’s way to dismiss my concerns.
My daughter on the other hand was a screamer. The neighbor’s could hear her cry from a mile away. She was the “perfect” newborn until she turned 3 weeks old (3-4 weeks old is the typical age for the onset of reflux). She would cry from the moment she woke till she went to sleep. Lots of hiccups, wet burps, sour breath, gagging, drooling, and she was a terrible sleeper (a catnaper ... typical of reflux babies). She would roll and squirm around constantly in her sleep … from pain. She would arch her back and pull her little legs up to her chest and cry. She would also stiffen and scream. At one point she started refusing to eat and was losing weight. She didn’t eat for 72 hours straight! I am not joking.
In both cases my doctor would say well they might outgrow reflux let’s wait and see! I remember telling him, when my daughter refused to eat, WAIT and SEE???? for her to stave she has not eaten in 72 hours. I am not sure what he wanted to wait and see … I guess that was his way of saying I don’t know in a professional manner. Wait and see!!!! Hummm I don’t think so DOC!
2. What signs should someone look for to know if their child has reflux or digestive issues?
1.Irritability, excessive crying or screaming
2.Vomiting or regurgitation
3.Appearing to be in pain
5.‘Wet’ burp or hiccups
6.Congestion, ‘snuffling’ or appearing to have a cold
7.Bad or sour smelling breath
- displaying a fear of food or unwillingness to eat
- pulling away and arching their back
- crying during or after feeds
- refusal to feed or only taking a small amount despite being hungry
- comfort feeding- wanting to feed or suck frequently
- catnapping during the day
- difficulty settling
- frequent night waking (though some refluxers do sleep well at night)
- restless or easily disturbed sleep
11.Gulping, Gagging, spluttering
13.Respiratory problems e.g. choking, coughing, wheezing or frequent chest infections
14.Weight issues e.g. inadequate weight gain, weight loss or excessive weight gain
15.Frequent red, sore throat, with infection not necessarily a factor
16.Recurrent ear, throat or sinus infections or croup
17.Drooling or excessive salivation
19.Gagging themselves (using their hand/fist/fingers)
3. Is there a difference between having reflux and digestive issues?
There is a difference between reflux and any digestive issues. The most common digestive issue with children that present with reflux is protein intolerance. As for other digestive issues such as malabsorption etc … I can’t speak to those, as I am not well informed.
Most experts debate about reflux and protein intolerance. There seems to be no consensus about whether reflux is caused solely by protein intolerance. I can’t debate this one either since both of my kids did better without milk protein based formula. However, they were also simultaneously medicated. What helped??? Medication or milk protein free formula? … I have no idea.
We were referred to a GI specialist when my daughter was one year old and still had not outgrown reflux. The GI specialist we see said she would have changed the milk first and then see. In her experience most kids need both milk protein free formula (neocate … I call it the Golden formula) and medication for reflux.
4. What treatment did you use to help your child?
There are many different treatments … this is what worked for my children.
Medication – Zantac (until he turned 1 year old)
Formula – Alimentum thickened with oatmeal cereal (rice cereal would constipate him) (until he turned 1 and then went on to cow’s milk)
Food – All dairy products were not introduce until he was 1 year old unless the
milk was cooked such as in mac and cheese.
Medication: Zantac once a day (until it stopped working or I don’t know if it even ever worked she was 3 ½ months) then Prevacid solutabs 2x a day (until she was 13 months) Zantac again twice a day (from 13 months and still on it at 16 months).
Formula – Nutramigen thickened with rice cereal (until she was 3 ½ months) then Neocate formula thickened with rice cereal (from 3 ½ months until 13 months, then Almond milk (since she was 13 months).
Food – All dairy products are a BIG NO NO …. She will have ice cream and cheese but very limited …. NO milk and NO yogurt.
Sleep: On her Belly from 3 weeks old
Management tips for both - head of bed elevated, burp frequently and well, feed slowly and feed often, hold upright for 45 minutes after each feed, wear baby, hold as much as possible.
This support association was a God send:
5. Are there specific formulas that work well for reflux, gas, etc.?
YES! Try Nutramigen or Alimentum if those don’t make a difference then you will have to go NEOCATE. All other formulas are all the same and it is a myth that one will help over the other … I call it coincidence more than “the fix” and this is research based. It is simple milk or soy protein (if your baby can’t tolerate milk protein chances are he won’t tolerate soy protein either) is in all formulas except Neocate. The difference is Alimentum and Nutramigen completely hydrolyze (fancy way to say the milk protein is pre-digested) the milk protein in their formula. Good start and Enfamil gentleease partially hydrolyze the milk protein (so it is somewhat digested) and then you have lactose free and soymilk. Experimenting with formula for a reflux baby is a waste of time like I said go straight to hydrolyzed milk protein formula and if that doesn’t help then Neocate … problem solved in a matter of 2 weeks and not months.
6. Does gas have to go hand in hand with reflux?
Well yes and no … if you look up reflux alone it can cause gas … like I mentioned above most babies with reflux have milk protein intolerance. Milk protein intolerance causes gas.
7. What ideas do you have that helped - propping baby up in bed with wedge, burping between ounces, etc.?
Get educated and seek support. Reach out to other moms that are in the same situation … and when your baby outgrows reflux (and they will) lend a hand to someone who is in the process of managing reflux.
8. What is the best advice somebody gave you or info the doctor gave you about this?
My doctor was not helpful in this situation … my grandmother who is 93 has had 16 kids said to me … listen to nobody but your baby and then fight for him … she understood what nobody else did …and yes I fought for my kids and I take no well meaning criticism from no doctor … the specialist we saw when my daughter was 1 year old criticized the treatment she was on … I clearly said to her exactly these words: “No amount of degree or experience you have gives you the right to even comment on my daughter’s treatment and the decision my husband and I made along the way … this journey is tough enough as it is … we are happy to be here and look forward to exploring my daughter’s future plan for reflux management … if you can’t abstain yourself from commenting about the past then we should part ways immediately” yes I said it exactly like this … my husband’s jaw fell and the doctor had no idea what to say …. This momma was done with well meaning people who can’t seem to keep their opinions to themselves … I have worked and struggled way too hard to have my daughter finally be at peace that I wasn’t going to be criticized at any level for anything we did … nobody has as ant right to do that.
We love my daughter’s specialist … after that encounter she knew where I stood and we looked at the future working together to get my daughter medication free and possibly have the ability to enjoy a big Ice Cream cone in the near future.
9. What is something annoying people have said or done related to this experience with your child?
1. Criticize how we treated our daughter (medication, formula, etc.)
2. Is this your first baby? (Yes it's my first baby but I still have a brain. I didn’t turn incapable of making decisions and knowing what my baby needs once I gave birth to him)
3. Oh let’s wait and see she will outgrow it! (hummm I am here because she has refused all source of nutrition for the past 72 hours … not sure what you want to see)
10. Will your baby have this forever? When do they typically out grow it?
98% of babies with reflux outgrow it by 1year old … the rest mostly by 2 years old … 1% of those that have not outgrown it by 1 year old will never outgrow it or will only outgrow it by the time they are 6-7 years old …
11. Any books or web sites that helped you?
The Reflux Book, A Parent's Guide to Gastro esophageal Reflux : http://www.refluxbook.com/
12. What is your advice to moms who know something is wrong and think it could be gas/reflux/digestive issues?
If your baby shows any sign of reflux and your doctor says let’s wait and see then ask to see a GI specialist … If your doctor says well let’s try this ask to see a GI specialist … when your doctor wants to experiment with your child it is because he doesn’t know what to do either … don’t take no for an answer my friend waited to long to stand up to her pediatrician and her son suffered for it … he is 3 and has a severely damaged GI tract it will probably take years for him to recover.
Gas drops and all that natural stuff DOES NOT WORK!!!!!!!! It is a coincidence or a myth … they might help but it does not solve the problem.
13. What else can you share about your story?
As hard as it is please remember that this too shall pass … the journey is long and heart wrenching but in the end well worth it. You will make mistakes and have great regrets but in retrospect you will have done what you could and what you knew at the time.
Both my children are wonderful children and I cannot imagine not having gone through this journey with them. What this journey has taught me is the true meaning of perseverance and hope. You do not receive the ability to persevere or to be hopeful you acquire it.
The few words I spoke at my almost breaking point while crying my heart out because I didn’t think I could take one more day of this journey was: “THIS IS SO HARD … IT IS SO HARD BECAUSE I CAN’T GIVE UP! I JUST DON’T HAVE THAT LUXURY.” Truly think about these words and what they mean … I said this to a nurse practitioner that requested to see me after I was frantic on the phone because my daughter had not eaten for 72 hours. These words are etched into my heart and soul and bring great meaning to my life. This was a moment in my life that if I could have I would have given up but didn’t because my kids mean the world to me … in that moment and time I finally “felt” what unconditional love, perseverance, and hope meant … this was the moment that defined everything I was, am, and became!
Nobody’s hands can comfort your baby as well as yours when he or she needs you the most. And nobody will fight as hard as you to bring peace to his or her little bodies.
One day you will look back and see this journey as a strengthening moment in your life … you will see it as moment that defined who you are as a person, a woman, and a mom. These moments don’t come everyday seize this moment to define yourself and learn from your struggles. I sure did.