Has anyone dealt with ongoing digestive issues that no one can figure out?

[Anonymous]

My LO is 9 months and has had ongoing digestive problems since birth. It's been a nightmare getting anyone to listen to us that this isn't just "normal baby stuff" and we're not just whiny, incompetent parents. I'm so frustrated with the situation and so desperate for an answer. Can anyone sympathize and/or offer experienced advice?

I love-love-love-love-love our ped. She is amazing and has been so supportive and understanding, but everyone else has looked at us like we're crazy. We've seen a feeding specialist, a GI, even done alternative therapies to no avail. Our GI basically said he's fine and that maybe we need to have someone come over to teach us how to be parents. Our ped was really mad when she heard this and assured me that we are not imagining this or overreacting.

My son has gone to all formula now and seems to be having even more trouble since that. (BFing never worked for us, so I pumped exclusively for a long time, until I just couldn't do it anymore.)

For at least a month-and-a-half, he has had bad gas and uncomfortable poops. We thought it was constipation, but the usual treatments didn't help. Then it seemed like he got diarrhea. He poops often and is very uncomfortable. He also seems to not like eating because it makes the gas and poop move, so he's often struggling to drink his bottles.

He's up most of the night and screams for hours sometimes. We thought maybe it was teething, but our ped assured us that the extent of things is more than just teething. Overall, his health is pretty good -- fine for growth and weight-gain, looks healthy in exams. This is why the GI felt we were exaggerating.

We thought this might all be reflux, so we tried a million different reflux drugs, but none improved things. He's now on Zantac, which helps a little but doesn't solve any of our overall problems. We also tried hypoallergenic and other formulas to no avail.

Our ped is doing stool samples and blood tests on him and referred us to Children's for a second GI opinion. I'm grateful that she's taking it seriously, but I'm just so exhausted and stressed. I'm tired of other people with babies who have typical teething and pooping problems looking at me like I'm a whiner and like I can't handle things because they don't understand the extent of the situation, but I don't really want their pity either. I ended up with PPD from all of this and am on meds, and I think my psychiatrist and psychologist think I'm exaggerating things, too, but I'm really not. Yes, he seems like a sweet kid when we are out, and he IS, but he's also not feeling well most of the time.

I'm worried about him and don't want anything major to be wrong, yet I also don't want him to be in pain like this. It's so frustrating. Any words of support or advice?

[Anonymous]

Have you discussed food allergies with the Docs? I'm wondering if your DC has a milk allergy.....

My DC has/had many food allergies and what you describe sounds like what we dealt with initially.

Hope you can get to the botttom of this and help you all. Hugs.

[Anonymous]

I'm the PP poster. Ooops. Sorry, just re-read your posting and saw that you tried hypoallergenic formula already.

Have you tried elemental formula? My DC reacted to Neocate but could tolerate Alimentum RTF FWIW, so it really depends on the child. My DC happened to be IGE allergy to corn.

Did the GI Doc discuss any allergic conditions with GI symptoms (eosiniphilic gastro disorders)?

[Anonymous]

Have you considered a geneticist? He may have a metabolic issue that is genetic in origin.

I recommend that you consider going to Kennedy Krieger. Our geneticist there is Ali Fatemi. He is has been tireless in tracking down what is behind my daughter's variety of symptoms, which include metabolic and motor problems, some GI issues, and other issues. He can often recognize genetic issues from a constellation of symptoms.

I think I recognize your posts from Special Needs. This has been going on too long for you to deal with this just from regular doctors's advice. Your baby may have a rare syndrome. It's time to call in experts.

[Anonymous]

Really sorry this is going on. was he fine the first 7 months?

Has he had an X-ray? Just wondering if he has a blockage of some sort.

[Anonymous]

Have you fed him Neutramogen instead of regular formula?

[Anonymous]

OP here. Thanks, everyone! 12:40, yes, I posted in Special Needs several months ago -- good memory!

12:37, thanks for the perspective on allergies. How did you find out your DC had the allergy to corn? I actually had wondered if corn might be an issue with my DS because he got worse on the Neocate and because I had a bad reaction to corn while pregnant (nausea at the thought of eating it).

The ped is doing stool samples and sent us to have blood drawn to test for a bunch of things, including allergies (although I'm not exactly sure how that works -- I thought you needed to do a skin test or something??).

We got an appointment with Children's GI for a second opinion, but we can't get in until the middle of Feb. Our ped said to emphasize it was a second opinion so they looked at it more closely than a first-time visit.

12:43, he has always had some difficulties, but it's gotten worse since early December. I thought about a blockage, too, but I think it's probably something that's been going on all along.

12:40, I will look into the geneticist as an option. It's scary when you google "metabolic problem." Hopefully there would be something in blood tests that might suggest a need to look further into this avenue?

I think one of the major problems in getting people to look into this has been that my DS is actually quite healthy, gaining weight fine, no motor issues, etc. He is tired a lot and therefore not very social, which worries me, but our ped thinks he is just uncomfortable and will be more social when he feels better. I do think tiredness plays a part in his behavior a lot of the time, but his tummy seems to cause the tiredness.

I have debated how far to pursue this if he is healthy physically, but I do think that the sleep deprivation is starting to interfere with his ability to socialize, and I think he would be a much happier kid (and we would be saner parents!) if we could get this worked out.

Honestly, I suspect we might not get a solution, but an answer of some type might be helpful so we at least know what's going on.

Thank you all! If/when we ever figure this out, I will let you know!

[Anonymous]

I was thinking allergies, too. Or a food sensitivity. Oddly, I reacted to soy milk while pregnant and it turned out that DD is allergic to soy. My youngest is five, so I'm not really up on the latest formulas, but you should try googling EACH one that seems the most natural (free of gluten, soy, corn, etc.). Try a search like Ailmentum + food allergies. And find one that is as close to nature as you can get. All the GMOs allowed in our food can make some people's digestive system a real mess. Sadly, the FDA will wait until millions of people (babies included) suffer needlessly. I am sorry you and your baby are going through this. I do hope you get to the bottom of it soon! Big cyber hugs!

[Anonymous]

OP, I had one reflux kid and one just regular difficult, fussy kid so I get that a parent knows when their infant is uncomfortable. We had a great ped GI who was very experienced and basically told us that it's all trial and error, and each reflux case is individual, so you have to keep trying different things. In that vein, I'll throw out a bunch of ideas and even more questions:

**Have you tried a variety of different formulas? My reflux kid tolerated some formulas much better than others.
**Have you tried using probiotics?
**Did you try using Prevacid in addition to Zantac? And if you did, did you use it compounded or the Solutabs directly?
**Can you offer more details - you said "he poops often and is very uncomfortable." How often? How can you tell he is uncomfortable?
**Also, you mention he is overtired: how much does he sleep? Have you established a good napping schedule?

I don't think any of us can give you THE answer, but it does sound like one possibility is that your child has reflux that isn't adequately treated by the Zantac.

[Anonymous]

Yes-severe reflux from birth-diagnosed in NICU with an upper GI scan. Nightmare. Even once puke under control- never had formed stool. Very unhappy baby with some shrieking and arching. We tried everything over the course of a few years including feeding therapy. Then I started reading about Celiac. We have no family history, though I later found out we do have the gene in family background. DS had several symptoms. Didn't want to put him through more tests.

We didn't go gluten free until preschool and we did it gradually. We also added a powerful probiotic. After a few weeks he started having normal bowel movements-formed and healthy. A month or 2 after that he morphed into a happier kid. Happy tummy, happy kid?! Anytime we accidentally gave him gluten he had an explosive BM and misery. It didn't solve all our problems, but it made a big difference.

Incidentally I went GF too and felt better-more energy, not more mild digestive discomfort. Now more research is coming out about the link between Hashimotos which I have and gluten sensitivity.

[Anonymous]

Sorry you are having this problem. This was our child too, from birth. Couldn't pass gas, would scream all the time in pain, constantly spitting up and throwing up but gaining weight well. Just miserable though. After some trial and error we found DC could happily tolerate Alimentum. The regular Alimentum. Baby was a whole new kid after just 2 days on it. It was a godsend. Diagnosed milk protein and soy allergies. Good luck. I hope you figure it out.

[Anonymous]

Sorry you are dealing with this. DC is 9 months. Have you introduced solids? You mentioned a change to diarrhea so I'm wondering if it happened the same time you introduced other foods.