Jacob displayed first signs of sickness in February. It started with mouth ulcers, and then came diarrhea. Not just any kind of diarrhea - it was a diarrhea that never stopped. It would be bad, really really bad, for a day or two. Then he would have very soft stools for a couple of days. Then he would get very bad again. Sometimes, there were days with no stool at all, then there would be 10 exploding diapers the next day. He never had any diarrhea at night but he would wake up and immediately have an extremely watery poop. If I wasn't there to catch him when he woke up, I would find him soiled, wet, and very stinky. He had lots of undigested food in his stool. He lost weight, then regained it. On bad days, he would simply sway and fall over, out of a stand. He was grumpy, he was whiny, he was not my sunshine child anymore.
It was scary.
I took him to a doctor who wanted to put him on antibiotics. I left and never saw the doctor again. I called doctors in Germany, in the US. The symptoms just didn't make any sense. Everybody warned me to take care that he would not dehydrate. We made him drink, and drink - and we were very pleased to see that dehydration was not a problem. That, in turn, baffled the doctors - kids with diarrhea, especially with chronic diarrhea, do get dehydrated.
I don't know how many hours I spent on the Internet trying to find out what was going on with Jacob. His symptoms were baffling. The come-on-go in waves part of the illness was not explained by anything I read. The ulcers didn't fit. He looked to darn healthy to begin with. And the only thing I came up with that fit all his symptoms was celiac disease.
This came as a shock. A life-long diet? A complicated diet in this part of the world? We decided to give it a try and with the help of some very nice and very helpful celiacs among the US Expat community, we managed to put Jacob on a gluten-free diet. Within a day or two, he got visibly better. He had a formed stool for the first time in months. I was both elated and deeply scared. I had not wanted Jacob the be a celiac child. His life would be so hard, and not only now. There would be no beer-and-pizza with his buddies one day - both those items are no-no's for gluten-intolerant people.
So, we stopped the diet and he got worse again, within a day or two. This seemed to be all the confirmation that was needed. In order to have his disease medically evaluated, we took him to the Children's and Youth Hospital here in Arapkir. The hospital may not look like much from the outside -- it is being renovated and expanded at the moment, though -- and the famous doctor we saw didn't even have his own office. He would wander through the corridors with us trailing behind him, peeking into rooms until he found one unoccupied.
They ran all kinds of tests and came up empty-handed. No sign of infection. No parasites. The test for antibodies to confirm celiac disease came up negative. Nothing. He's healthy. He's fine.
But - the diarrhea persisted. We were in constant contact with our health insurance and they finally flew us out to Germany. Jacob was admitted to the Leopoldina Hospital in Germany, and again, a whole battery of tests was run. Blood counts, stool cultures. EEG, ultrasound. Neurological evaluation. Nothing. Slightly anemic but not to the point where it was worrisome. The celiac test? Negative, again. Food allergies? Nada. But, I said, the gluten-free diet brought a change, within a day or two! No, they said, that's not possible. It takes at least a week for a gluten-free diet to have effect on a celiac. He's fine. Don't be hysterical, relax. He's fine.
Only, he wasn't. After a brief sojourn, he had another bad attack the week after we left the hospital. Then again two weeks later. In the US, we had one exploding diaper after the next. We returned to Yerevan in late August, worried and upset.
Finally, we took a photo of Jacob's ulcers, sent it to the health insurance, and they reacted fast. They knew what kind of doctor they wanted for us. And then they found a gastroenterologist for us, at the University Hospital in Frankfurt, Germany. We were cleared to leave, about to start packing...
... and I did a last Google-search, "chronic watery diarrhea in toddlers"...
... and I found an article on Chronic Diarrhea by Dr. Jon A. Vanderhoof in the journal Pediatrics in Review*. He distinguishes chronic diarrhea by age onset, and this is the section about the toddler age:
Chronic Diarrhea in the Toddler
The differential diagnosis of chronic diarrhea changes during the latter part of the first year of life and into the second year. The most common cause of chronic diarrhea in this age group is irritable colon of infancy, also known as chronic nonspecific diarrhea.
This disorder is believed to be a variant of irritable bowel syndrome. It is not uncommon to find a family history of irritable bowel in parents or siblings.Patients who have this disorder typically exhibit intermittent loose, watery stools. The presentation can vary from two to three mushy stools on one day to five to ten watery stools on other days. The intermittent nature of the diarrhea often is helpful in making the diagnosis. Stools usually are not expelled at night, although it is not uncommon to have a very watery stool immediately upon awakening in the morning. These children manifest normal growth if they are not placed on hypocaloric diets in an attempt to control the diarrhea. Because of the intermittent nature of the diarrhea, they often are misdiagnosed as having food allergies or recurrent episodes of viral enteritis. The assumption of food allergy is strengthened in the minds of the parents by the common presence of vegetable or other food particles in the stool, which are simply a manifestation of rapid transit.
The mechanism for diarrhea in this disorder appears to be altered gastrointestinal motility. Despite relatively rapid transit, absorption is intact and the child will grow well if fed adequately. Institution of a high-fat, low-carbohydrate diet is often helpful because of reduced dietary osmolality and the effect of ileal fat reducing intestinal motility. When fat reaches the ileum, secretion of gastrointestinal hormones, primarily peptide YY, slows gastric emptying and small intestinal transit, thereby providing some improvement in the child's diarrhea. We usually tell parents to encourage ingestion of meats, vegetables, butter, gravy, and whole milk and eliminate all simple sugars, especially sucrose and juices. Addition of fiber in the form psyllium mixed with applesauce also may aid in improvement. [Emphasis mine.]
Dr. Jon A. Vanderhoof, MD, Pediatrics in Review, 19 (12): 418. (1998)
That was it. As clear and as simple as that. I did more googling, now that I knew the name of the beast. It sounded, as my doctor friend Natalie put it, as if Jacob had read the article, so perfect was his presentation of all the symptoms. True, it did not explain or address the ulcers. But all the rest was there.
But here's the thing: We read this, and decided to try the high-fat, low-carbohydrate diet for one month. And today, only 24 hours after we changed his diet, he had two semi-solid poops. No more diarrhea. Just like that. And his ulcers are gone. Just like that.
We are holding our breath. The visit in the clinic in Germany is
postponed, not canceled. We can't quite yet believe that it may be so
simple. But so far, so good.
Apparently, Toddler's Diarrhea is fairly common. It is often
connected with high levels of fruit juice intake - which is not the
case with Jacob, me not being a fruit juice fan (you want fruit? then
eat a fruit!). It resolves itself, as spontaneously as it comes - most
kids are over the diarrhea by the time they are four. We could live
with that.
But why did none of his doctors spot this? Again, taken from another site, the typical symptoms are:
- Age between 6-30 months. Most are better by 4 years of age.
- 2-6 watery stools per day. There can be periods of days without stools. Many stools contain undigested material and may drip down the child's leg from the diaper.
- Normal weight, height, and head circumference growth curves without falling off.
- No evidence of infection.
- Stools are hematest negative.
- The child looks well and there is no evidence of malnutrition and no history of abdominal pain.
- Growth may be compromised if the diet manipulations that have been tried to control the diarrhea have not been enough calories.
- There is often a history of colic, gastroesophogeal reflux, and family history of irritable bowel syndrome.
He had all of those symptoms. He - and his brother - all had bad colic. One would think that pediatric gastroenterologists - or pediatric doctors in general - would know about this. The fact that the gluten-free diet had an effect within a day should have made them wonder about fast digestion. It didn't. What is there to say?
Thank you all for thinking of Jacob, and wishing him well. Thanks for all the help, in all the plenty forms we've received it. We came out the other end a bit ruffled, but none the worse for wear. We're just glad we've arrived and we are hoping that all will be well. We'll let you know in a month.
*In case you're wondering: Many medical articles are free to view and read when your ISP is in a developing country. Lucky us!
Well. It seems that pediatricians would be familiar with this, but I'm just glad that this little saga had such an *uncomplicated* ending--celiac would make life so difficult. Three cheers for just growing out of it....
Congrats to Jacob (and you too, of course)!
Posted by: Renee | September 30, 2007 at 08:58 PM
Note to Jacob's parents,
Hi,
My name is Kari and I found your site today from Santa Barbara, California. I am hoping you get this email. I have been pulling my hair out, over my son's chronic diarrhea/ mushy stools over the course of the last 9months. I too have wondered if we are going to have to make radical diet changes/life changes. I found the article you refenced but couldn't open it from the APA link, so I was so happy you inlcluded it in your site description. I would love to ask you some other questions...so if this note finds you (please God!) I would really, really appreciate your experience and insight.
Thank you,
Kari
Posted by: Kari Figgins | October 06, 2007 at 07:42 PM
Hi,
I, too, am dealing with a toddler who has chronic diarrhea, and it has been awful. We were told by our pediatrician that his constant diarrhea/mushy stools were an after effect of a bad virus and the issue would correct itself. 7 months later, and we're still dealing with it. At my wits end this past weekend, I started doing some internet research with my mom, and we were so happy to find your blog. I read this on Saturday, and on Sunday we changed his diet. Immediately, his stools have firmed up, and his appetite has improved. I, like Kari (above), couldn't open the link to the article you referenced, so I am hopeful you will post some more about how your son is doing in response to the new diet, and would be open to answering some questions.
Thank you!
Kristen
Posted by: Kristen Gilbert | October 11, 2007 at 12:04 AM
Gluten allergies and celiac disease are terrible for the intestines and colon. I am so happy that you were able to identify the problem with your child.
Posted by: IBS survivor | December 05, 2007 at 09:07 AM
I found your site after searching toddler's diarrhea. We just got back from a visit with a pediatric GI to learn more about my son's (age 3) history of loose stools. Diagnosis was toddler's diarrhea, although he's running a test for malabsorption. He's a picky eater and eats a high carb, high fiber, low fat diet, no milk. Any advice on how to change the diet, or any books/websites you used? Thanks for the info and for sharing your experiences.
Thanks,
Lisa
Posted by: Lisa | January 17, 2008 at 07:43 PM
Thank you for your information. I too am thrilled to find your blog. I've got a 39 month old that has had mushy poop for 6 weeks and he pediatrician has no answers. I am going to try the high fat, low carb diet. Can you give me suggestions of what you are feeding your children?
Posted by: Katherine | April 02, 2008 at 06:41 AM
My son was dignosised with toddlers diarrhea as well. He has ALL of the exact same symptoms as Jacob (except the ulcers). I followed the directions of the doctor telling me to decrease juice. My son was almost 3 years old when we confirmed blood in his stool. Gastroenteroligist still said he had Toddler diarrhea but believed he may have an little polyp. He did Blood work/stool samples all we negative. He finally did a colonoscopy and endoscopy. My son has IBD which is Ulcertive colitis and Crohns disease. We have been to many doctors and second opinions. I am told this is an Autoimmune disease where the body fights and infection and just never stops fighting even though the infection is long gone. I am still not convinced this is what my son has. I just think after 3 years of diarrhea; of course his small intestine and colon would be inflamed. Just an FYI be careful accepting SIMPLE toddlers diarrhea (as the doctors put it) because in my opinion there is nothing SIMPLE about it. I would appreciated hearing from anyone who has a child suffering with this.
Posted by: Dawn Hamilton | May 08, 2008 at 05:32 AM
Thank you so much for this posting. we have be dealing with TD for over a year. I would love to try a low Carb, high fat diet - but not sure where to start! Does anyone have any menu ideas?
Many thanks
Charlotte
Posted by: Charlotte Wall | June 21, 2008 at 05:37 PM
Thank you so much for sharing your story. I have a 14-month old who has had on and off diarrhea for 4 months. The characteristics you describe are ones that I see in him. And, he suffered from real bad gastric reflux as an infant... I will use this reference when visiting the gastroenterologist!
Posted by: Ileana | June 27, 2008 at 05:57 PM
i found this by searching for mushy poop in toddlers, and aside from the ulcers sounds similar to my sons problem. he is 2 1/2 and its seems he has never had a firm stool in his life. once and awhile. i will try the high fat low carb diet for him, and i hope it helps. potty training is so hard when the poo is mushy and wont come off his butt. and it stinks! thanks for posting and sharing your experience. it helps to hear others solutions. doctors dont know everything!
what types of foods are you giving him? just wondering where to start.
Posted by: Faye | November 26, 2009 at 06:10 AM
Hello Faye -- we are pretty much where we always were. Jacob still has mushy stools but we don't notice them so much as he's now completely potty trained and has been for a while (since Easter, actually).
We just let him at his own pace and we finally got him out of the diapers at 3.5 years. That's kind of late but he had to have the physical skills to run to the toilet and get his pants off.
He's doing fine and is a happy, healthy little boys. We don't give him anything special to eat at the moment and he doesn't seem to mind the loose stools much. I just couldn't cut out fruits completely and he's a sturdy little guy, so the high-fat diet lost its appeal for me after a while.
He has no accidents and being out of diapers means he doesn't get diaper rash anymore either. We're now waiting for the magical disappearance act that should happen between now and age 5-8. We shall see, eh?
The tongue ulcers seem completely unrelated, btw. Our family doctor told us that some kids just have this so-called "map tongue", and it's nothing that hurts or hinders him, and he'll just have to live with it.
I hope you and your son will be able to take this whole business in stride. There is little one can do -- but one CAN potty train and that's nice to know, no?
Sorry for the late reply - I didn't see this comment until just now.
Best wishes from us and don't hesitate to ask when you have more questions. (Also, see the sidebar for some informative links.)
Posted by: claudia | December 02, 2009 at 08:28 PM
omg ! i think u just saved me my boy is two and has all these symptons and iv been searching for ever for an answer with no help from my doctors they just continue to tell me im overreacting to nothing.... and every time i take him in his sores arnt there. i also just got the idea to take pictures . then i found similar pics on line of this geographic tongue and this is the only sores i have ever seen that match .... i pray this can be all it is. i really appericate ur puting this up and am hopeful we can finally get my son some help ! thank you :)
Posted by: Paulie | August 20, 2012 at 09:24 AM