My reflux child: looking back

[Anonymous]

Hi, my name is Jeremy and my wife previously used this forum to help her get through some very tough times. After my daughter was born, I decided to quit my job as a scientist and become a stay-at-home dad. As my daughter celebrated her 4th birthday last weekend, I began to think about everything we had been through with her and decided to revisit this website to share our experiences.

My daughter had a severe form of milk allergy/reflux called FPIES (Food Protein Induced Enterocolitis Sydrome). In general, FPIES is different from garden variety reflux in that the immune system bypasses antibodies and reacts directly and violently to antigen (cow’s milk protein). In my daughter’s case, she would begin repeatedly vomiting after exposure to cow’s milk and would then require an ER visit, IV, and hospitalization.

Although I could probably write a book about our experience, I will try to keep my story short. After my daughter was born, my wife was advised to give her formula for a week until her breast milk came in. At about 1 month, she began to show signs of reflux by crying and arching her back after she drank breast milk from the bottle. We were told by the pediatrician that we should just do whatever is necessary to help her drink and be comfortable. This began our quest to help her drink and gain weight. As the months passed, things got worse and our methods to help her more extreme. She would sleep in a swing (elevated position) and would only “sleep feed”. I had a video monitor aimed at her swing and would watch her until her eyes closed…then, I would sneak into her room (being careful not to step on creaky floorboards!) and gently remove her from the swing and feed her. To add to the craziness, I would track exactly how much milk she drank each day and write the data on a chalkboard in her room. As time went by, her weight continued to drop until she was “off the chart”. At this point, a gastroenterologist gave her Prevacid which initially didn’t work until they doubled and tripled the dosage. Then, slowly, she showed some signs of recovery and relief…and her drinking volume slowly went up. Unfortunately, by the time she was given Prevacid (at almost a year old), she had developed a feeding aversion.

During all of this, my wife went on a strict no soy/dairy diet and continued to pump until my daughter was 2 years old. She chose to do this because the only alternative was to give my daughter the gross tasting Neocate. In addition, the research papers I read indicated that breast milk can actually help kids with reflux recover faster and not develop other food allergies. Our pediatric allergist agreed. At around 20 months, my daughter finally passed a cow’s milk challenge at the hospital and our nightmare finally came to an end. Today, she is healthy, smart, and lean (25th percentile on weight) and still doesn’t like to eat large amounts of food.

Although I didn’t go into all of the tests, feeding clinics, and specialists… or the emotional toll this experience had on me and my wife (yes, we are only having one child), there were a few lessons I learned from this:

1. In our case, antacids were effective and should have been (but weren’t) given early to avoid feeding aversions. Our first pediatrician was anti-intervention…we eventually found another one who helped!

2. The hardest thing for me was watching my daughter lose weight and not eat. However, kids, even at a very young age, will tend to do the opposite of what you want them to do. The more you want them to feed, the less they will want to do it. It’s hard, but try to be relaxed about feeding and act like you don’t care whether they eat or not.

3. Realize that your child will be ok and you will get through this. Stressing out about reflux only takes years off your own life and doesn’t help the situation. I stressed out, and looking back, I wish I had found other ways to deal with the stress.

nat_o2013-07-22 13:56:10

[Anonymous]

OH WOW!! Thank you SO SO much for posting!! Stories like this can really help others. I am very glad that your little girl finally got well.

My children were not as bad as yours but I wondered if we should have an only child after my first one was so miserable. But we took the chance and had a second child. And sadly he was worse than our first. I was DONE!! Although my husband and I had earlier talked of 5 or 6 children… there was NO way I could handle anymore children like my first two.

Luckily for us, we found that probiotics and digestive enzymes helped our boys tremendously (more than meds) so I decided to brave it one more time and loaded myself up with probiotics and enzymes to pass on to my baby.

Amazingly I have a little girl with very little digestive problems!!!! 🙂 Someday I believe we will have 1 or 2 more children.

Although I know that probiotics and enzymes have helped a lot of children with digestive problems, I am not saying that they can help with FPIES though. I honestly don’t know a lot about FPIES. But it sounds very very scary and stressful.

Your wife should win an award for pumping her milk so long for your little one. That is really awesome!!! Congratulate her for me!

And you… you need an award to for deciding to give up being a scientist to be a stay at home dad! I can tell that your little girl has wonderful parents! 🙂

[Anonymous]

My reflux I

Baby is now 3 years old. Our story is similar as he would only sleep eat or eat with the leaf blower. All of your findings match mine. One in addition is that I wish we had done a feeding tube. Instead of having him be hungry and in pain and hate food it would have been better for him. I think we didn’t do it because we didn’t want a ‘sick’ baby. The other difference is we decided to have a second child. Unfortunately she too has reflux but not as bad s my son. My son got better after about 14 months, so yes it does end but that felt like 14 months of hell I don’t want to relive. It steals you of the joy of caring for your precious baby. Thanks for the look back.

Natalie

[Anonymous]

Natalie- I totally agree about the reflux stealing the joy out of caring for your child. And wow, lawn tools for the bedroom? We had the windows completely blacked out with thick plastic and a HEPA filter for white noise to facilitate sleeping/eating. The swing was key, though…I’m surprised it continued to work night and day for over a year. Our ped gastroenterologist recommended at one point that we get the feeding tube. I still had a lot of fight left in me at that point and didn’t want to “give up”. I got a second opinion from another gastroenterologist who said that even though my daughter’s weight was off the chart, her length and head circumference (ie brain development) were continuing to grow normally. She recommended forgoing the feeding tube because: 1) feeding tubes can delay/inhibit solid eating skills because the child will not be hungry and 2)as with anything invasive, there are risks. She also recommended giving my daughter <gasp> fast food. At first, I thought she was joking…but her point was to pick the lesser of two evils: feeding tube or french fries. I picked the fries (along with other things, of course), and it actually helped bump her weight back up to a measurable percentile. Today, she still loves McDonald’s, but we have worked with her to enjoy fruits, veggies, etc. She actually loves broccoli! Anyway, my point is to not feel bad about the feeding tube decision…sooner or later everything goes back to normal. Finally, you mentioned that you had a second child with reflux. The research papers I read indicated that there is a very strong genetic component to reflux…in other words, if you have one child with reflux you will likely deal with it again if you have more children. This was one of the big reasons we decided not to have more children…I’d rather not go through hell again. Of course, adoption is still an option. 🙂

[Anonymous]

Thanks for your kind words…now that the reflux is gone, I relish every moment with my daughter (except maybe when she skips a nap). We gave our daughter probiotics (Culturelle) as well. However, we didn’t see much of an improvement in her breast milk intake when she was on them. The idea was that probiotics (like breast milk) help to train and “desensitize” an overactive immune system so that things like cow’s milk can be tolerated. However, from what I read, the research on probiotics seems to show mixed results on the benefits to reflux kids. Whether or not they help is probably highly dependent on the individual and the root cause of the reflux. My thought was: why not, it can’t hurt…and it just might help.nat_o2013-07-22 15:04:54

[Anonymous]

I just thought there was no way baby 2 could be as bad. Lol. She isn’t but I have a lot of stress around feeding her, especially when she is reflux ing. With my son I’m not sure why but he has not yet caught up. He hates food, yes, even fast food and both his height and weight is still off the chart. He is going to be seen for his growth in two weeks to see if there is another cause we aren’t aware of. I’m so glad you are enjoying your child now. It really is such a special time. 🙂

[Anonymous]

I agree too that digestive problems totally steals the joy out of babyhood. 🙁 I honestly did not enjoy my boys much as babies. When I had Shiloh I was amazed at how much different it was to have a baby that was a happy baby!

I have never heard of that description of how probiotics can help. My understanding of them is this…

Probiotics are the good, live bacteria that coats and protects the entire digestive tract. They get killed by antibiotics and also excess acid will kill them. A baby has no probiotics until it is being born, as they pick them up from mother’s birth canal. Then they get a very strong “dose” of them from colostrum. Mother’s milk will continue to give probiotics to them too. Most babies don’t have their probiotics fully built up until they are 3-6 months of age. When probiotics are low, it causes reflux to burn and therefore results in pain. So by giving a probiotic supplement it will coat the digestive system and alleviate pain.

Many probiotic supplements do not contain very many strains in them. Some contain only one or a few, and some will contain as many as 10 or more. When we are low on probiotics we are low on many kinds of probiotics. Not just one. So when using a probiotic supplement it is best to use one that has at least 10 strains or more. Culturelle contains only one strain so that may be why it didn’t help much.

When it comes to helping a child be able to tolerate dairy better, often digestive enzymes can play a big part in that. Digestive enzymes are in all food to aid in digestion, but when a food is cooked or processed then the enzymes in it are killed. Our pancreas makes digestive enzymes to aid in digestion too but when we as a nursing mom have a diet of mostly cooked and processed foods or if baby is drinking formula, then it can be really hard for a baby’s pancreas to make enough digestive enzymes to compensate.

Proteins (particularly in dairy) are one of the hardest things for a baby to break down. Proteins need a lot of enzymes. So if a nursing mom will take digestive enzymes every time she eats then it can help make her milk be much more broken down and easier to digest. Or if a formula fed baby will take digestive enzymes then it can help their bodies digest food much better.

There are many brands and options of digestive enzymes to choose from. You can get just plain protease enzymes which are for breaking down proteins but we use one that has various enzymes for breaking down all types of food as in proteins, carbs, fats, sugars, etc.

When taking probiotics and enzymes it works best to take them together for proper delivery and balance of the GI system. It is also good to take prebiotics too as they are food for the probiotics. Happy Mom2013-07-23 16:24:52

[Anonymous]

This is so helpful, thank you very much. I’m going to try the enzymes as I have never heard of that!

[Anonymous]

You’re welcome! I hope they will help your little one! I have spent a lot of time reading and asking questions about digestive problems/probiotics/enzymes but am by no means an expert yet! But I do like to help others if I can! 🙂

You can read on this page of my blog about how to find good quality probiotics and digestive enzymes. http://help4acidreflux.wordpress.com/how-to-choose-the-right-probioticenzyme-supplement/ Also Laura (hellbent) knows of some links to threads on this forum about moms finding help with probiotics and enzymes and what kinds they used. She’ll probably comment here soon. Happy Mom2013-07-23 18:09:08

[Anonymous]

HappyMom- I agree with your description of probiotics. In addition, coating and subsequent pain relief of the digestive system is a good theory due to the biofilm production of probiotics. Biofilms (like the brightly colored sheets of thermophilic bacteria you see in Yellowstone) act like huge, living colonies of bacteria. They actually prevent other harmful bacteria from growing through “competitive inhibition”. When I mentioned that the immune system might be trained by probiotics, I was referring to an old immunology paper that theorized that this might occur my introducing additional antigens that would train immature T-helper cells to be less reactive. There was no data to support this statement…just a theory. Anyway, I was reading in the literature last night and came across this interesting paper:

http://www.jacionline.org/article/S0091-6749(08)02229-X/fulltext

If you look at the references, you can often read other similar papers on probiotics. You can also search papers on http://www.pubmed.org and type in search terms such as “probiotics infant reflux”. Adding a few peer-reviewed papers to your blog would also be a nice touch. This is important for parents talking to their pediatricians because most doctors will not take you seriously until you hand them an actual peer-reviewed scientific paper. Would love to talk more…my masters degree was in microbiology and “talking science” is always fun! 🙂

[Anonymous]

Oh how interesting!! I enjoy science but in truth am not very knowledgeable in it. I pulled up the site you gave and I will certainly read it as soon as I have time. Hopefully tonight. 🙂

I am sure you are right that adding peer-reviewed papers to my blog is a good idea. Thanks for the idea. I will look into that!

[Anonymous]

What about chiropractic work to treat reflux?

[Anonymous]

I personally think it is worth a try. Some say that it really helps. I never tried it with my children though.

[Author]

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