You may - or may not - know that our almost-two-year-old has been having medical issues for quite a while. A detailed description will take hours to write down, and will bore everyone but the most dedicated medical student to tears. Suffice it to say that he has chronic diarrhea (since February!), accompanied by a host of other strange symptoms that range from tongue ulcers to gross motor control issues to extreme irritability. Throw in very dry skin and skin eczema, loss of appetite, gradual delay in language development...
We've been testing for celiac disease, amoeba, giardia - the usual suspects. All negative. Since he's adorable and wonderful, it's hard to believe he's sick just by looking at him. Which is ultimately what the doctors did in the German hospital when we were evacuated this summer. All the tests were negative, EEG normal, neurophysical exam normal, stool normal, blood normal.... all but a diagnosis of anemia remained normal. They labeled me hysterical and sent me home.
And things did not get better. Now we are at the point where we are ready to point guns at doctors if they would just keep at it and find a REASON.
Truth be told, in the summer when we were in the German hospital, Jacob did show relatively few symptoms, and he did not exhibit those tongue ulcers that squick me so. But he did yesterday (as he did last week, and the week before, and the week before that...). So genius struck my husband and we took a picture, sent it to our health insurance - and it really is true that a picture says more than a thousand words. We got an answer within the hour, and now we have the task of finding a "competent pediatric gastroenterologist in an academic setting with experience in developing countries".
That's easier said than done. Any ideas?
You may look at the picture of the ulcers under the fold, if you are not squeamish and think you can help us identify the cause of all the misery. Or if you are not squeamish and just curious.
Ruled out are: Celiac disease, giardia, amoebiasis, various food allergies including nuts, soy, wheat, egg, and milk.
UPDATE: We actually solved the puzzle only a few days later in September 2007. On my own blog I have a sidebar with links to valuable articles about Chronic Diarrhea of Childhood (which is what this is called).
Also, the tongue "ulcers" are no ulcers and the syndrome is indeed called "geographic tongue" like so many helpful commenters have suggested. Thank you all for your continuing interest and support.
These days (2010), Jacob is a big hulking kid who has the occasional loose stool but has been toilet trained successfully almost a year ago. He's never had any accidents, no matter how bad the diarrhea was on any given day. He still has the funny tongue and very dry skin, but other than that, all is well. It surely isn't something I would want to revisit and the stress and the fear from those days are still with me. We still read all the comments, so if you have questions, write on. You can also leave a comment over at Expatria at the post entitled "Enigma" which is a re-post of the first link I mentioned. Best wishes to all parents who are going through the same as we did.
Hi there,
This is Noel's fiancee. Children's Hospital of Pennsylvania has a number of GI specialists. I looked online and did not really find any with international research interests per se. However, Dr. Raman Sreedharan - a pediatric gastroenterologist - seems to have had training in India, the UK as well as the United States. Perhaps you could contact him? The web page is:
http://www.chop.edu/consumer/pat_care_fam_serv/staff_profile_page.jsp?id=85452
I called the directory services at the Children's Hospital and the number that they gave me for him is 267 426 2866.
Let me know if you have any more questions.
Best,
A.
Posted by: Noel's fiancee | September 16, 2007 at 08:08 PM
Claudia, I've been to CHOP, twice, with actual children. I wouldn't take a dog to CHOP, not even to have it put down. I share this sentiment with pretty much every mommy I know who left the building with a child who was still alive. (apparently, if yr kid is dying? nowhere better. I've filed it under "in case of end-stage leukemia.")
my road-lagged idea is to google journal articles about topics in pediatric gi specialty and find out who wrote them & where they practice. so happy to read the television was scaring you half to death. best!
Posted by: lala | September 17, 2007 at 05:05 AM
Perhaps some dental filling material is toxic/allergenic. Honey coat the tongue as a natural antiseptic,antibacterial and anti inflammatory or eat raw honeycomb. Read about beta 1,3 glucan.
Make sure he isn't getting ahold of anything to purposely make himself ill if he's depressed or some such. Good Luck.
Posted by: Andy | September 17, 2007 at 05:51 AM
Wow. OK. I've got one kid with persistent proteinuria (i.e. kidney problems) and one with Crohn's Disease, so I feel for you with the "my kid looks healthy but in reality has a mysterious disease". 2 is young for IBD (Crohn's or ulcerative colitis -- inflammatory bowel disease) but it certainly sounds like it might be a possibility. This will suck horribly if it's that, but at least you'll have some way to address it.
The tongue looks like a B vitamin deficiency to me (I get this myself and two or three days on a B supplement or a daily vitamin clears it right up) -- try some supplements *but* if he has ileitis, that's going to be the cause of the deficiency, because the ileum is where B vitamins are absorbed. So it's not going to do you a whole lot of good to supplement if it's ileitis, because it won't be absorbed well anyway. It won't *hurt*, mind you, and some may very well get in, but it's not going to be a permanent fix.
Second point: anemia. The ileum is also responsible for iron absorption. Anemia was our first clue something was really wrong with our daughter.
If it *is* ileitis, the reason for the diarrhea is that the bile salts released by the gall bladder to digest fat are (you guessed it) reabsorbed by the ileum; if it's inflamed, it doesn't, and the salts irritate the colon and also keep water in the stool as it's passing through.
Excess undigested sugars also keep water in the stool instead of allowing it to reabsorb in the small bowel, and that's why e.g. lactose intolerance, which is an inability to digest milk sugar, produces diarrhea. Incidentally, the ileum also figures in the production of lactase, so you might want to take him off milk products immediately to see if you can get the diarrhea under control. If you can get lactase tablets, they work, and you might be able to get lactose-free milk, which is milk already treated with lactase so the lactose is predigested.
You're in Eastern Europe, right? So the medical system is ex-Soviet? They should definitely be OK with checking serum levels of B vitamins -- give that a shot and see if that might not be the problem with his tongue. Did they do a sedimentation rate? That's an indicator of inflammation, and while it's not diagnostic on its own, it would be another non-specialist item they will definitely be able to do locally. Also, if you can find somebody who can do a small bowel radiological series, that might be helpful.
Like I say, that's *way* early for Crohn's to show up (usually symptoms occur in, well, 13-year-olds like my daughter, up to later adolescence or adulthood). But it sure looks like it. Of course, when all you have is a hammer, everything looks like a nail, so you probably want to find, well, a competent pediatric gastroenterologist, perhaps one in an academic setting with experience in developing countries or something.
Dr. Esther Torres at the University of Puerto Rico might be one -- we just saw her last week and she certainly seems quite competent based on one visit (and she's highly recommended *and* is a researcher), but Puerto Ricans in general don't see a lot of IBD -- or that is to say, they haven't until recently. And I have no idea what her readiness would be to something like an email exchange; most medical people are pretty reticent about that kind of thing because of litigation fears.
How's your food situation? Can you try a starch-free or very low-starch diet on him? It's not easy everywhere in the world, but going by Hungary, you could probably do pretty well with a meat-and-vegetable (Auslauf) diet. Avoid bread, potatoes, rices, etc. -- check scdiet.org for some recipe ideas that might be possible to adapt to whatever you have in your local stores.
Feel free to email me at michael@despammed.com if you need any more of my amateur help, or my wife at agnes@vivtek.com -- she's doing a lot more of our reading-and-research on the topic.
Anyway, if it's Crohn's, well, that sucks. It's doable, he can live with it, and he'll have more and more company over the years until we figure out how to cure it (hell, what even causes it) -- but it still sucks. Let's hope it's something else.
But try B supplements first.
Posted by: Michael | September 17, 2007 at 06:41 AM
Oh, and: cute kid, what I can see of him. Ha.
Posted by: Michael | September 17, 2007 at 06:56 AM
Oh, *and* (sorry) the behavioral issues and the rest of the stuff might also be a digestive thing. Just because you did a RAST test for IgE food allergies unfortunately doesn't mean there are no food allergies there.
There's a condition called "intestinal permeability" or "leaky gut" which enjoys widespread conspiracy-theory status around the crackpottier parts of the Internet, but there's also some kernels of useful truth in all the crap. Intestinal permeability can be genetic in nature or it can be induced by environmental causes, and what happens is that stuff in the bowels gets into the bloodstream without proper digestion. This can be an osmotic thing or just plain due to ulceration, and the causes are extremely unknown. It's all got something to do with intestinal flora, but what, exactly, is very unclear -- it's *really* hard to do good clinical studies of diet, because you can't actually control or record people's diet with any accuracy. So dietary studies are... lacking. So far.
Suffice it to say that there *are* good clinical studies linking, for instance, autism to leaky gut. Most doctors are really uncomfortable with this approach, because it's new, there are also inconclusive studies, and, well, the crackpot factor screams very loudly -- but there are people getting very good results with a dietary approach to autism.
Your kid's not autistic. But these proteins that make it into the bloodstream wreak all kinds of havoc in the body and brain, and they eventually provoke the immune system into allergic or inflammatory responses, usually stupid ones like, say, kidney disease or inflammatory bowel disease or rheumatoid arthritis or ankylosing spondylitis or supercalifragilistitis or even less likely-sounding diseases.
If you address the digestive problems (if digestive problems they turn out to be) then the rest of it might clear up as well.
There's hope, there really is.
Posted by: Michael | September 17, 2007 at 07:06 AM
Claudia: if there is anything that we can do to help, please contact us off-line.
Carlos: I am remembering what you said about barfights. But this one can't be deliberate, can it? I am trying.
Posted by: Noel Maurer | September 17, 2007 at 07:13 AM
First - thank you all.
The recommendations help, although our medical insurance wants us to explore local options first (which we have alreday in June, and the leading specialist in Armenia sent us to Germany).
Aimee (sorry, I'm not entirely sure how to spell your name!), thank for the suggestion and thanks to lala for quantifying it. That's why we're asking - many times someone looks really good on paper but less so in real life.
Andy, Jacob is two. He's certainly not depressed (if there ever was a sunny child, that's him), and he doesn't go off to find his own food (yet). He surely knows what he wants, and refuses whatever he doesn't want, but the alcohol is too high on a shelf even for him.
As for fillings - my kids have none yet, and I hope that they evaded both my and Doug's bad teeth. Let's hear it for fluoride! But thank you nonetheless for helping out!
Michael - thank you for the wealth of information. Yes, we've been thinking about Crohn's. As you say, it's very unusual to have it that early, and yes, it would suck big time. He exhibits some of the symptoms but not all -- not that that means anything. At the moment, we're keeping our fingers crossed for some kind of unusual parasite that is good at hiding and can be shot at with heavy antibiotics and other meds. Anything curable would be really nice.
As for vitamin deficiency - he is taking a daily vitamin, and a good one, too. I don't recall whether he was tested for vitamin deficiencies in Germany but I think they did. Gotta look that up to be sure, though.
Noel, much appreciated. We'll let you know if we need a place on a couch at some point. ;-)
Posted by: claudia | September 17, 2007 at 09:42 AM
Well, Crohn's is a lot more manageable than the medical community would have you believe. You'll read a lot about fistulae and bowel sectioning and removing the colon -- don't believe it. That's what happens if you let it go for a few years, *and you won't*. And there are some very hopeful lines of research out there; a lot of this immunological stuff is nearing a kind of synergistic landslide.
*And* just as most gastric ulcers turned out to be helicobacter infections (after they always thought bacteria couldn't survive in the stomach at all), it's extremely probable that this sort of ulcerative and inflammatory disease elsewhere in the GI tract is also bacterial in nature. Some people have good results just with antibiotics.
So it's not as bad as it might seem, at first glance. IBD is manageable with diet and if you manage it, it doesn't do all the scary stuff.
Posted by: Michael | September 17, 2007 at 07:02 PM
Autoimmune Hemolytic Anemia?
Posted by: Bernard Guerrero | September 17, 2007 at 07:28 PM
Autoimmune Hemolytic Anemia?
Posted by: Bernard Guerrero | September 17, 2007 at 07:31 PM
Anything with "auto" in it scares the living daylights out of me.
In any case, his CBC was okay. Only the first CBC here led us to believe there was an infection but that result wasn't repeated in Germany.
This is interesting though - my brother has been barred from blood donation due to his elevated bilirubin levels...
I'm always amazed how they figure these things out. Our bodies are so darned complicated, it's a miracle they work as well as they do.
(No, I don't mean that in a religious sense.)
Posted by: claudia | September 17, 2007 at 08:16 PM
So his anemia has resolved?
Posted by: Michael | September 18, 2007 at 07:47 AM
Claudia, some of the best doctors for expertise in third world, "exotic" pediatric issues here in the U.S. are "adoption doctors." I know that German families adopt kids from places like China and India and parts of Africa, too, so...
Could you ask your family "back home" to look for the equivalent of the orphan doctor (http://www.orphandoctor.com/) from whatever reputable international adoption agency is closest to them?
If not, I can try to do some research myself, but I don't speak/read German, I'm afraid.
Posted by: Carbonel | September 27, 2007 at 09:09 AM
I don't know if you are still looking for an answer but I have recently been experiencing all of those symptoms. In fact it was the image of your son's tongue that caught my attention--that is exactly like mine!! I was just informed that I have suddenly developed a food allergy to cinnamon!!!
symptoms: ulcerated sometimes swollen tongue, nausea, vomiting, dizziness, diarrhea, personality changes (mood swings) especially in children!! Some people only show 1 or 2 symptoms--which is what I appantely had for years. Now it is full blown and I require an epi pen.
Posted by: kiki | April 24, 2008 at 10:04 AM
i have the same problem, with the tonque, i dont know if its an allergy, stress, bacteria , virus but its not nice and ive been trying to get rid of it with lots of cleansing and special ulcer mouthwash, it goes away or gets reduced but it always comes back, so i dont really know what to do or where to go, should i go to a dermatologist? please advise
oh and i have another question, do you think people around me can get infected? like girlfriends maybe, because i havent kissed anyone out of fear of infecting them, i hope youre kid gets well and we all find out what this is
good luck
Posted by: nano | May 17, 2008 at 11:01 AM
Wondering who had bad experiences at chop? i'm going thru something w/my daughter who is NOT gaining weight..i'm at chop and not crazy about the options they're giving me. HELP!
Posted by: nat's ma | May 23, 2008 at 01:05 AM
I HAVE THE SAME THING ON MY TONGUE, DOCTOR SAYS ITS GEOGRAPHIC TONGUE,ALTHOUGH IM NOT SO SURE. I HAVE NO OTHER SYMPTOMS. have finaly found out what it mite be?
Posted by: MIGUEL | May 25, 2008 at 10:05 AM
Strawberry tongue is what I see. Hope it's all taken care of by now.
Strawberry tongue is the appearance of tongue with inflamed red papillae, giving an appearance of strawberry. It is seen in Kawasaki disease, toxic shock syndrome, and Scarlet fever. It may mimic glossitis or B12 vitamin deficiency.
Posted by: Dr. Anil | May 29, 2008 at 06:24 PM
Our oldest is 2 1/2 right now and exhibiting the same symptoms. We have an appointment scheduled with a GI specialist in August. Only recently did he start to show ulcers on his tongue. My wife and I were wondering what the diagnosis was with your son?
Posted by: Pedrick | June 29, 2008 at 04:19 AM
hi, i was interested to see the pic of your sons tongue as my son is the same and im wondering what this is as no one seems to listen to me. did you get feedback at all yet?
hope your son is doing ok
regards
krystle in ireland
Posted by: krystle | July 16, 2008 at 03:06 AM
This is a photo of "geographic tongue." It is hereditary, and common to 15% of the population in the US. It is red outlined patches that change, or go away, over time. It is not painful, or occaisionally slightly so, to spicy foods. No known etiology other than genetics. No treatment required.
Posted by: Dr. George M Horsley, DMD | July 23, 2008 at 10:02 PM
How weird. The photo brought me to your blog because my tongue just did this yesterday. I have no idea what started...it's the first that I've had it.
Posted by: Susan | August 06, 2008 at 03:56 AM
How weird. The photo brought me to your blog because my tongue just did this yesterday. I have no idea what started...it's the first that I've had it.
Posted by: Susan | August 06, 2008 at 03:56 AM
I would make sure to check his iron storage, since an iron deficiency can cause ALL the symptoms you mentioned. The fact that he has anemia is another dead giveaway iron might be involved.
Ferritin, TIBC, Iron. A bone marrow biopsy is the gold standard--- but that is pretty unpleasant and invasive.
Good luck!
Posted by: Greg | August 14, 2008 at 06:53 AM