Musings of a Marfan Mom

Hydrogen Breath Test

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You might have deduced it from yesterday’s post, but it appears the parasite may not have been the cause of J’s GI problems, after all. There was a little nagging worry in the back of my mind that the parasite was normal (it’s part of the “normal gut flora” for 20% of people), but J made it awhile without the diarrhea starting back up so I really thought we were all done with this.

J is on week 4 (?) of continuous diarrhea. We have an appt. out of state next week to see a GI who specializes in Loeys-Dietz syndrome (a related disorder with lots of GI issues), but our pediatrician wanted us to see someone local in the meanwhile. Not only is the diarrhea not helping J’s malnutrition at all, but he’s started requesting to eat bowls of crushed ice so I’m pretty sure he’s anemic again.

After looking over all of J’s recent records and asking lots of questions, plus doing a rectal exam and getting an abdominal x-ray, the new doctor sat down and mapped out several possible diagnoses. He said this could be a malabsorption issue, an allergy issue, or “toddlers’ diarrhea.” He ruled out toddlers’ diarrhea right away, given the malnutrition and anemia. The doctor thinks most evidence points to a malapsoroption issue (some of which could be metabolic disorders; crohns and celiac also fall in this category. We have definitely ruled out celiac and crohns does not look likely.) and suggested we start testing for that category first.

Yesterday J had a test to check for bacterial overgrowth in the small bowel. They were looking to see whether his body can break down glucose. It was negative, so now we might have to do it over again to check fructose…we’ll see when we meet with the doctor again in a few weeks, as well as what the out of state expert has to say.

In case your child ever has to do a glucose/fructose/lactose breath test (hydrogen breath test?), here is what you can expect.

First, your child will have to drink a sweet drink. How much depends on your child’s size; J is 25 lbs and he had 4-6 ounces. But, since he can’t drink thin liquids, he had to have an NG tube put in. Warning: it is very sad to watch. You should also know there is the chance your child will gag up the tube, so that it will come out his mouth, covered in snot. :-(

NG tube for hydrogen breath test

A very sad J, getting his “drink” via NG tube


During set intervals, your child will need to breath into a bag. At first it’s every 15 minutes, then every 30. If one of the bags comes back positive, the test ends. Otherwise, the test lasts 3 hours.
glucose hydrogen breath test

He enjoyed breathing into the bag.


There is a lot of downtime. I suggest taking the opportunity to explore the hospital!



That’s basically the whole test! It is a fasting test though, so know that if your child is young, they may be super cranky by the end. J was!

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4 Comments

  1. poor, poor, J and poor you! Boo has a frequent diarrhea (or as I call them HAZMATS) vs. constipation issue. Have they done a test to see if the food is moving too slowly thru his digestive tract? Boo’s was negative, but it might be worthwhile for you. It is another long day, but it was worth it to cross something off the list.

    I worry though, if by trying to cross that may be wrong off the list if the small tortures are worth it.

    I keep trying to find that magic ball that will tell us what is wrong without causing discomfort!

    [Reply]

    marfmom Reply:

    Hmm do you know the name of the test? Was it an upper GI? I know they checked for impacted stool, but that was an x-ray. He hasn’t had an upper GI.

    [Reply]

  2. It was a gastic emptying scan. You had to keep them hungry and then they gave them a food or drink with an additive. They then laid Boo down and scanned her as they watched the food pass thru the digestive tract and intestines. The test was at least an hour long that I recall (it was a couple of years ago). The hardest part was keeping her still for the scan! I hope I am not leading you down a path you do not need to walk. But here is the info on what Boo had done:

    http://www.childrenshospital.org/az/Site939/mainpageS939P1.html

    [Reply]

    marfmom Reply:

    So if a stomach is not emptying fast enough, it can cause diarrhea?

    [Reply]

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