My family’s battle with chronic diarrhea

Two-year-old Ash lives with adoptive parents in the United States, but he still suffers from a chronic illness he contracted in his home country of Ethiopia.

Two years ago, my husband and I decided to add to our family through international adoption. It took a year and a half to bring our son home. He’s been a wonderful addition to our family, and I can’t imagine our lives without him. But it’s been a rough road. He came to us from Ethiopia, where pretty much everyone lives with Giardia, a water-borne parasite that causes diarrhea.

We knew that he would probably come home with it, most kids do, along with a few other medical issues that were easily fixed upon arrival in the US. Giardia however, has proven to be a difficult condition to treat.

When we first met our son, Ashenafi, he had just turned 2; he weighed only 20 pounds but was a round little thing, plump with a big belly. You might even call him a bit chubby—for a 1 year old. At 2 though, Ash was in the .001 percentile for his size. We noticed right away his incredible, insatiable appetite, and with that big round belly, our first thought was parasites.

Ash is a healthy, loving boy, but he had all the symptoms of Giardia and tested positive right away. A round of the basic medication, Flagyl, and the doctors thought he was good. But he was still going to the bathroom up to ten times a day—watery, uncontrollable, and smelly beyond anything you can imagine. At times, I couldn’t even be in the bathroom with him! While collecting samples, my own stomach churned.

His next Giardia test came back negative. For months, doctors ran every other test they could think of, but we got no answers. Children’s Hospital in Seattle called it “toddler’s diarrhea,” a label, I’ve learned, they dispense when they have no other answers. They said to feed him more fiber.

Four months after coming home, Ash was still going up to ten times a day. Fortunately, in Ethiopia, from the time babies can sit up unassisted they place them on a small potty every hour, so Ash was potty-trained. I can’t even start to imagine how mothers deal with Giardia in diapers! But Ash cried every time we would make him use the toilet. He didn’t have the words to tell us if it was hurting him or if it was just because he was sick of doing it so often. As a mother, it was hard to watch my little guy go through this and not be able to make it better.

Call it mothers’ intuition or whatever you like, I had a feeling we weren’t over Giardia. That’s when we stepped up our own research. We talked to parents who had adopted, scientists we worked with, and doctors in the field. And I was right. After many negative tests, we got a couple positive for Giardia. It seems parasites ‘shed’ on an irregular basis, so it can be tricky to get a clear diagnosis. We had our answer, and even better, there was a solution. Ash was put on a stronger round of Flagyl and, within days was having solid poops, one or two times a day, and no horrible smell.  It was just before Christmas and this was the best present ever.

In January, Ash returned back to school. We were all excited. With diarrhea it was hard to keep a steady routine. You have to always worry about where the bathroom is, do you have enough clothes for blowouts; you don’t want to be in public when something like that happens with the smell and the mess. It feels like your life is on hold. 

He made it two days at school and had an episode of diarrhea. Turns out it was still Giardia! By now we knew what we were dealing with, but finding a doctor willing to do something about it wasn’t easy.

His symptoms got worse. Another round of tests found blastocystis—typically a parasite that has no symptoms. We did more research. We asked for a referral to the University of Washington Adoption Clinic. We asked to try different medication.  Nothing.  Our doctor told us he thought Ash wouldn’t take it because it tasted bad. This was just something Ash was going to have to live with.

We didn’t agree….at all. As a mother I couldn’t stand by and watch my son have to deal with this as it got worse. Now, if there was weight loss or failure to thrive, maybe they would have been more willing to do something, but Ash drinks plenty of water and is a good eater so it wasn’t causing any other medical issues. But as a mother, if something can be done for my kid that won’t hurt him, why wouldn’t I do it?

It turns out the medication we wanted was one simple pill. And when we finally got it and crushed it up in apple sauce, Ash took it just fine—and asked for more! Things cleared up by the next day, but we are still on a restricted diet to help his intestines heal and to starve the parasites.

We don’t know if Ash still has Giardia. He has loose stools every once in a while, and we get new tests in two weeks to see if the magic little pill worked. We are cautiously optimistic, but my gut says we are still dealing with something. Our doctor told us we could try this pill but that that would be it, he wouldn’t prescribe it again or try anything else. We don’t know why, but this seems to be a common theme in US doctors treating internationally adopted kids with Giardia.

So we wait. We wait to see if he still has a parasite. We wait to see if our doctor really won’t do anything if we get a positive test result. We wait to see if we can get a referral if it is positive or if we have to pay out of pocket to see a doctor who might be willing to help us. We wait to see what our next move in treating our son is. He shouldn’t have to live with this. We have easy access to medication and healthcare, and yet we have found it so hard to get treatment. Is it the cost? Is it lack of awareness?  It’s been so hard to watch my child have to deal with this. No child—and no mother—no matter where they live, should have to suffer chronic diarrhea.

— Emily Jeffers, Project Administrator, PATH

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