10 months and nothing helps!

Hi Teri,

Welcome to this site! It is truly a great place to get help and support. I just wish I had had access to the web and known about this site when my boys were suffering so badly.

I am terrible sorry that your little girl is not doing well. I know just how terrible it feels to not know what to do anymore! When you say “she screamed bloody murder and constantly vomited”, that sounds just like how my boys were. But your little one has been through a lot more testing than my children did.

I have found it extremely interesting how different reflux symptoms can be in children.

Some barf all the time… others hardly barf.
Some have diarrhea… some have constipation.
Some don’t sleep more than 15 minutes at a time…. others sleep for 10 hours straight.
Some have blood in their stools… some don’t.
Some want to eat all time… others refuse to eat at all.

And yet often times (not always though) the cause is the same… acid reflux and/or food intolerances.

My children screamed in pain for many hours at a time, wanted to eat all the time and yet were terribly skinny, had blood in stools, barfed everywhere, and hardly ever slept.

What works for one child doesn’t necessarily work for the next. There are numerous types of formulas, many meds, elimination diets, and other treatments and products that help children with digestive problems. But what one mom swears by, the next mom may curse. 🙁 For many parents, it is a matter of trial and error to find what works for your baby.

The best thing I can recommend is doing exactly what you are doing… researching and asking questions. There is a ton of info on the internet and I find other moms to be my best source. 🙂 This site has a lot of great info and you can find it by using the search button on the top right hand corner. Be sure to search back 6 months and later.

When my children were babies, they were started on meds before around a week old (and didn’t go off until they were ages 1 and 3). And the only formula they could tolerate was Nutramigen. If I would’ve known at that point that there was formulas that have the proteins even broken down more, I certainly would’ve tried them. I had a pediatrician that wasn’t very helpful and I felt as if I was making decisions on my own what was best for my child.

When my boys were ages 2 and 4 we decided to try giving them a supplement of digestive enzymes and probiotics. I knew very little about them or how they worked but just doing it because a friend suggested it. Well, we were VERY surprised and happy that they helped more than any meds or formula ever did!!!

I find it interesting how since we found how much they helped our children, I have others tell me that they have helped their children too. And yet their symptoms were quite a bit different, like one child was facing having a feeding tube put in because of refusing to eat and not gaining weight and now is doing a lot better. But there also was one mom that her child’s symptoms were much like mine and she said the probiotics and enzymes didn’t seem to help.

I certainly feel that they would be worth a try for you!

Here is a link to a page that I have written that explains why and how they are beneficial. https://www.infantreflux.org/forums/topic/probiotics-digestive-enzymes-can-help/

Also, you can look at my blog (see signature) and find other mom’s stories of finding help and also a lot of info and links to places with info related to digestive problems.

I wish you the best and hope that soon you will find the right thing(s) to help your sweet little girl!

Yes, I can understand how you feel when you say you hope your daughter had a disease. I often felt the same way even though my children certainly were not as bad as your little girl. 🙁

Probiotics alone can beneficial for many babies because it takes 3-6 months for their bodies to get them built up. But when babies still have digestive problems beyond that, they are normally having a problem being able to properly break down and digest their food.

Have you ever tried giving her digestive enzymes? As I stated before, they are not a cure but I personally believe that almost all babies and children who suffer from digestive problems are most likely deficient in digestive enzymes. And many will benefit at least some from taking a supplement of them.

Digestive enzymes are what are in all foods (before they are cooked or processed) to aid in breaking them down. They are especially needed for breaking down proteins. If a nursing mom eats a diet of mostly raw foods this can help some but unless the foods are organically grown, they are not very enzyme rich. The pancreas is what makes digestive enzymes and it will try to compensate for the lack of them in foods, but for some babies it can be difficult for their pancreas to keep up making enough to break down the food (proteins in particular) that they take in whether it be through breast milk, formula, or solids as they get older.

For some babies, they can inherit the problems of their body not making enough digestive enzymes, and for these children, they may carry this problem all of their life. Just like the diabetic doesn’t make enough insulin.

When “food” is placed in the stomach, the stomach will excrete a small amount of acid to activate the enzymes so they will start breaking down the food. If there are no or little enzymes, then the stomach will excrete a little more acid. Eventually the food is forced into the intestines even if it isn’t fully properly broken down. If the food isn’t broken down then it will very difficult for the body to be able to absorb and use it. For some children, this undigested food will sit in the intestines too long and the longer “food” stays in the intestines, the more moisture that is drawn out of it, and it can cause constipation.

This excess acid that the stomach makes, can play a major part in some babies digestive problems. Too much acid will kill probiotics. And beings that probiotics are the protective coating for the entire digestive tract, then without it, the food, reflux, or stool will rub right up next to the esophagus and intestines themselves and can cause them to become raw, inflamed, and even bleed sometimes.

For some it can take several days or more for probiotics and/or enzymes to start helping. And they can even make symptoms temporarily worsen.

I would recommend at least doing some research on the benefits of digestive enzymes for babies and also asking your doctor what he/she thinks about it. Some doctors recommend them but some doctors don’t know a lot about them.

I do hope so badly that you can find help and answers! Please updated us on what you find out from the metabolic work up.

I am sorry that your doctor visit did not give you more answers! (((HUG))) I’m sure this is all REALLY hard! I don’t know if I have heard of bile reflux but I have heard of reflux that is not acidic but instead alkaline. Lately I have been trying to research this more (but don’t have much time). I have read of many children and adults that have pH probes done and find out that it is alkaline reflux. I have lately been reading that if this is the case it is due to too high of a pH in the stomach acid and/or not enough stomach acid being produced instead of too much. When this is the case, the enzymes to break down the food can not be activated to start breaking it down. I am still learning about this but I think the solution is to take hydrochloric acid pills when you eat to make the stomach be the right pH.

I am going to research it more and will consider having a pH probe done on one of my children. Or I might just try the acid pills to see what happens. It is hard for my brain to switch gears when all along I have thought my children are producing TOO much acid, and they are too acidic. But so far from what I have read it is my understanding that alkaline reflux is common and pretty much causes the same symptoms as acid reflux.

I wish I could tell you more about this but maybe you will be able to do your own research on it and see what you think.

Here is a copy of what I read someone wrote on a different forum in response to an adult that was wanting to get off of reflux meds. I don’t know if what all he said was correct or not but I found it interesting…..

I spent most of my career in clinical research and I have to tell you that you need to stop taking PPIs, or acid reducing meds. A little physiology: When you eat, the nutrients enter the stomach and are mixed with Hydrochloric acid (HCL), Pepsin, and a host of other enzymes. The HCL breaks down the nutrients into a thick liquidy mass called Chyme. The HCL helps sterilize the nutrients. Pepsin breaks down the proteins into peptones, which are the build blocks for the amino acids necessary for sustaining life. When the nutrients are broken down by the Peptic enzymes the acid is neutralized by the alkaline fluids generated by the Pancreas, it is further neutralized as it passes into into the small bowel. Pepsin is most active in the conversion of proteins when the stomach pH is at 1.0 to 2.0. When the strength of the HCL moves toward the neutral side the Peptic enzymes become less active in the conversion of proteins. At 5.0 pH these enzymes are completely inactive in the conversion process. On average the Pyloric Sphincter starts to relax at 4.0 to 4.5 pH, allowing the contents of the stomach to dump out of the stomach. The enzyme Gastrin is responsible for maintaining the tone of the Cardiac sphincter and the Pyloric sphincter. Gastrin is tied closely with the amount of HCL produced. If your Gastrin levels are low you will have fluids from the duodenum flushing back into the stomach and into the esophagus.

I would higly recommed that you get a pH diagnostic test, or gastro-gram, or pH capsule test, to determine what is actually going on in your digestive process. If you serch the we for pH diagnostic test, or pH capsule, you will find a lot of good information that will help you.

Any update? I can relate to exactly what you are talking about less the rash. My son is 7 almost 8 months and has already been hospitalized on a feeding tube but now they want to put the G tube in because he is inthe 3rd percentile. I feed him by syringe alot just to try to keep him hydrated. We are waiting for our genetic and metaboloic testing. MRI, upper gi, lower gi, ultra sound,xrays…all normal other than mild reflux. I really hope you have received some help.