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 [email protected] if you need any more of my amateur help, or my wife at [email protected] -- 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
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 06:54 AM
UM im just wondering if it could be benign migratory glossitis or geographic tongue.I have this and my tongue looks just like mine. Does your child complain of a sore tongue after eatin citrus foods? Unfortunatly there is no cure for this.
hope it helps
lilly
Posted by: lilly | August 20, 2008 at 08:41 AM
I used to get the exact same tongue ulcers when I was a small child and sometimes wheels on my chest and stomach. It came when I ate acidic foods such as spaghetti sauce, tomatoes; grapefruit; pineapple etc..and to this day I occasionaly get them after eating certain artificially flavored candies and beverage like store-brand flavored juices containing no real fruit juice. It went away on its own for the most part as if I developed a tollerance. I was surprised to read that they ruled out food allergy. Did they only test the foods mentioned above? ie. wheat, soy..and such? I hope you guys find out what it is. I will pray for him and your family. God is with you.
Posted by: Grace | September 02, 2008 at 01:37 PM
hi my daughter has the same thing maybe even worse withher tongue have you found any answer
to what it may be?? its ben on her tongue for about 7 months??? i need to figure out what it is???she is 4 years old .
Posted by: michelle | September 16, 2008 at 02:10 AM
It's geographic tongue. I also have it. It's not contagious. Very rare again only 15% of people have it. I've never met another person who has it other than family (genetic)
Ask your family if any of them are afflicted.
Green tea helps me.
Posted by: Kim | September 20, 2008 at 04:18 AM
Oh...stop testing him to death if it isn't that. Poor thing....it wont go away if it's geographic tongue....
It's really annoying but won't hurt him. :/
Posted by: Kim | September 20, 2008 at 04:19 AM
I also have geographic tongue and I have ecezma and dry skin. That goes along with the tongue. Maybe there is a developmental thing going on but the skin and tongue go hand in hand.
Posted by: art | September 20, 2008 at 04:22 AM
hey fren i am also suffering from the same,i wonder whether this is the symptom of dangerous disease.The ulcer is not hurting but spreading slowly to its near areas. It find this when i dont feel comfortable while eating spicy foods.Give me some advices ..
Posted by: Anil | November 14, 2008 at 06:38 PM
My wife currently has the same type of sores. After some research I found that a condition called Geographic Tongue is the most likely culprit. It causes bad breath and whatnot. Although they don't know what causes it they say to just use anti-bacterial mouth wash etc...The only other medication I can think of that may help is an oral solution from the dentist...they use it to treat Thrush.
Posted by: Brandt | November 30, 2008 at 01:49 PM
i know what this is. it is called geographic tongue. trust me i have it. im only 18 and i have had it for years. and it does suck, i would have to say. i went to my doctor when i first found out about it. they say they dont know what or how it is caused. but you will have it for the rest of your life. and it does suck sometime. beacuse you can really eat foods or drinks that you want..i cant really eat real bananas cuz it hurts my tongue to much. even some days it hurts really bad, or some days nothing at all..so for me to help you with this. its not contacious and sadly there is no cure for it..sorry, and all you gotta do is watch out for some certain foods he/she would eat. more like salty/ spicy foods. i wish the best.
-victoria walker
Posted by: victoria walker | December 21, 2008 at 09:34 AM
have you considered genital warts
Posted by: joe | January 11, 2009 at 11:16 PM
They told me it was geographic tongue, however after further tests it was determined that I had severe vitamin B-12 deficiency which was causing it! Vitamin B-12 deficiency affects so much more than your tongue, like your nerves and can do permanent dammage... Get your B-12 checked!
Posted by: Eileen Davis | January 30, 2009 at 05:08 PM
my tongue looks exactly like this and comes and goes but seems to come worse when i eat spicey foods or salty food when i eat bacon or a curry.
Posted by: craig | February 01, 2009 at 07:57 PM
Hello my name is Csilla I have a 2 and 6 months old. When I saw the picture I was shock I have the same for my son and he went through a lot of things in his little life. Operation tonsil and nose polyp, two weeks after open hips operation (they said that he got some infection from the first operation) rush on his body lots of sore troth and his tong is the same.. Yesterday one of his doctor told me that he has a dry tong, and I should give him more jus and water not just water and fruits and he give me a cream for his tong. All the test what we do is sows ok. please if you found something let me know
Thank you
Posted by: csilla | February 05, 2009 at 07:15 PM
Without having more information I am just making conjectures here. While this certainly looks like geographic tongue, if it is very painful it may just appear that way, but be masking something else. I am a Prosthodontist and treat quite a few patients with Candida (also called Monilia - a fungus) infections - called Candidiasis; however this has a different, yet similar profile...it may be an oral manifestation of ringworm, really a fungus. Candida infections invade the intestinal tract and cause many problems, including skin problems. Now I must qualify this by stating I have not seen an oral manifestation of ringworm, but treatment with a oral drug (pill form) to fight this off is certainly worth a try. The prescription would be similar to fight off a foot fungus, like Lamosil (oral pill, not ointment). Talk to your physician for a prescription, but you might first want to check out an Oral Pathologist for a second opinion, usually most good dental schools have one or more on faculty. When it comes to oral manifestations of diseases I would put my money on a good Oral Pathologist any day. They may need a biopsy (which you may have already had), but you might let them try again. You could try something for Candida, like Fluconazole (Diflucan) as well. There are many other possibilities of infectious agents, Sarcoidosis, etc, but let an Oral Pathologist help you sort this out. Don't get tunnel focused one one item, as my oral pathology professor said "You can have as many diseases as you pleases," so you could have more than one thing going on here. I hope you get some answers and help, as these posts are dated... Good Luck!
Posted by: Tom Hummert | February 20, 2009 at 07:52 AM
i have the same thing right now, it started by spots and gradually ended up being my whole tongue and its an allergy, my mom is a nusre and she confirmed it, i ate a cereal- based meat for the first time and thats what happened after, dont worry its nothing.
Posted by: Jessica | March 01, 2009 at 05:11 AM
Hi there I found your site by google searching what could be taking place with my 10 month old daughter. I recently notice similar looking spots on her tongue and am taking her to the doctor tomorrow, but thought I would search and see what I can find. Did you find out more?
I read some of your comments and the "eating citrus fruits" stood out to me only because I have recently been feeding Morgan them through an infant mesh bag. She suck and sucks on that thing until there is nothing left. Wondering if this may have something to do with it???
Do you have any feed back for me???
Please see my blog and you can email me directly from there.
Thanks so much.
Posted by: Misty | March 03, 2009 at 02:48 AM
I've got geographic tongue and it gets sore feeling and certain foods do make it feel worse. For me, my case has gotten better after having all my metal fillings removed and replace with plastic. It has not gone completely away, but is only about a 1/4 of the problem it was.
Also, I've been going to a dermotologist in VA that really gets down to the root cause of your health problems and has found that I have several deficiences that I'm hoping will cure the geographic tongue.
Check into mercury exposure for your child.
Posted by: BM | March 20, 2009 at 03:07 AM
To be honest, my tongue looks the same way and always has. The patches worsen and get tender and sore depending on different foods I eat but I've never really been too bothered by it. My doctor told me I have a "Geographic Tongue" and hasn't said anything else about it and didn't seem to concerned. The other symptoms would cause alarm but I don't think the patches on the tongue are much to worry about :)
Posted by: Alyssa | April 19, 2009 at 02:22 AM
Yeast Overgrowth (Candida)?
Posted by: Tiger | May 03, 2009 at 12:58 PM
I do Chinese tongue diagnosis as part of my acupuncture practice, so let me tell you what it means in those terms. The center crack is quite large and is located in the digestive area of the tongue. The yellow tongue coat in there indicates heat or phlegm heat. The swollen sides indicate phlegm, which in Chinese Medicine is a somewhat broader concept than in Western Medicine, but indicates a fluid metabolism problem. The ulcerations are usually associated with the condition called Stomach Heat. The mirror coat indicates that he has had what we call deficient (inflammatory) heat, and may be associated with Vitamin B deficiency.
I would note that the false positive and negatives on most allergy tests are on the order of 30%, so you might want to just try elimination diets. Celiac tests turn positive after lots of the damage is done, so the fact that he doesn't test out doesn't mean that gluten isn't a problem. Unfortunately you might want to look at 2 months of a strict gluten free diet in order to eliminate the possibility of gluten sensitivity, because gluten is like glue oon the intestinal villi. I would also look at probiotics and probiotic foods which should help a child with a tongue like that.
Good luck, unfortunately you will have to do detective work yourself it appears.
Posted by: Karen Vaughan, L. Ac. | June 04, 2009 at 01:15 AM
Hello, my daughter started having small sores on her tongue when she was about 1.5 years old. Along with that came constant diarrhea and she was very picky with her food. She barely wanted to eat anything at that time. Mostly lived on Pediasure. We did many tests including food allergy tests, ruling out siliac and crones... all negative. The dr told us she had "children's diarrhea" which I think is a cop-out diagnosis on his part. He should have just said he did not know, that would at least make him more credible. Nevertheless, after 2 years, the diarrhea went away and her appetite improved. Now, at 4.5 she only has these huge patches on her tongue (which currently cover 1/3 of her whole tongue!). I still don't know what it is. She says her tongue does not hurt and eats fruits and everything else. But when I came across your site, it offered me at least some hope as to finding out what it might be. I need to get her tested for mercury and b-12 deficiency as some have suggested... But we'll see if they find anything... If anyone has any more information on what else this could be, please let me know. Thank you. By the way, my daughter does not have any other problems like the psoriasis or eczema or even dry skin.
Posted by: Marcy Kerr | July 25, 2009 at 02:29 AM
Good day,
After looking at these photos, Im fairly certain that he may have crohn's disease...I myself suffer with this ailment...It usually includes fairly severe abdominal pains, specifically on the right side...as well as frequent tongue ulcers, and discoloration....you may have already looked into this..but if not, consider mentioning it...I hope for his sake that it is not, although it is very treatable....best of luck
Cheers
Posted by: Justin | July 30, 2009 at 01:19 AM
Marcy (and Justin),
Thanks for commenting! Jacob's problems have all but resolved in the meantime. We actually did have him tested for Crohn's disease which he doesn't have. The diagnosis of "Children's Diarrhea" is actually not a cop out -- it's a valid diagnosis. You can find more information about this diagnosis and Jacob's improvement (he's toilet trained and never has any accidents and very rarely loose stools these days) here: http://expatria.typepad.com -- this is my other blog and it contains some links to "Chronic non-specific diarrhea in children" which is the other name of Toddler's Diarrhea. Good luck!
Posted by: claudia | August 01, 2009 at 02:40 AM
My sister had a lot of these same symptoms. She was tested for celiac but it came back negative. She had problems speaking, balance and motor coordination problems, stomach cramps, diarrhea, passed out, facial paralasys, loss of memory, crankiness, sleepiness, lethargy, and the list goes on. Once she started on a gluten free diet she has not had any symptoms. The only time she feels any old symptoms come on is if she has accidentally eaten something with gluten or wheat in it. Even just a crumb can do it! Sometimes the celiac test doesn't pick up enough of what it needs to register the disease or it could be just a slight allergy to the same thing. God bless!
Posted by: Tiffany | October 28, 2009 at 10:08 AM
IT SEEMS LIKE ALLERGY TO COTRIMOXAZOL
Posted by: MEYSAM | December 05, 2009 at 12:02 PM
might be an std passed onto the child and something you may want to get looked at as well. Also if this comment works its a miracle and I may as well have the same problem.
Posted by: Chris | January 04, 2010 at 10:10 AM
My son who is just over two is having all of the same symptoms you reported and the doctors keep blowing it off like no big deal and I am just over reacting.
I am really worried for him and i was just wondering if you found out what the problem was!!! Please any info at all would be a blessing.
Look me up on Facebook. Thanks
Posted by: Stephanie Ahlgrim | February 17, 2010 at 10:05 AM
I have been dealing with all of this for three years. Started right after a dentist visit. I thought it was the material he used in fixing a broken tooth. he of course said no way. I just went to the dentist again for another broken tooth and my mouth is in an up roar. I have found that certain foods like soy, and semolina (wheat) anything with salt,or acid. Bananas. certain oils really bother my mouth. I have a list of foods i can eat if i go off them my mouth goes crazy. They (doc) call it yes geographical tongue I call it allergies. call it whatever it hurts like mad. You as a mother follow your gut on this he is your child and if you feel you need to keep pushing for answers then do so. If we all stop pushing and looking there will never be an answer. there is a reason this is happening and the docs wont look further. I feel it is all the crap they put in our foods and dental work. our bodies can only take so much. Good Luck :) dont give up !!!
Posted by: Tracy | October 15, 2010 at 04:54 AM
My son also has this and we were told it does occur in those who have an American Indian background (his is Cherokee) and a classmate of his , female also had it & was Cherokee also. It would only come out when he was having a health issue, such as a cold virus, anything that would make him sick, feverish ,e tc. So when I'd say "stick out your tongue" if it weren't looking like the pic of your son's tongue, I knew he was fudging me...It can look ghastly at times though. and can become sore when exposed to acidic foods.
But for the diarrhea, have him checked for those diseases/syndromes that could cause pancreatitis or pancreatic insufficiency. Sjogren's is one of them, but some test negative and can have the diease. Blood test for Sjogren's is SSA/SSB.They do a test of stool fat content, if any problems with pancreas are suspected. IS he complaining of any pain in the upper left stomach accompanied by the diarrhea? Do you notice it happens more when eating a high fat content diet? Burgers, hot dogs, fries? The fries did me in & I was hospitalized once with a chronic bout, but now take an RX Enzyme called Creon to aid in digesting all foods. It's the same medicine they give kids with Cystic Fibrosis. Sjogren's destroys the ability of glands to make the fluids needed for digestion from chewing to stomach . (does he complain of dry mouth & eyes?) Dreadful syndrome. Good Luck! email me privately if you'd like
Posted by: Cathy Pogorzelski | December 18, 2010 at 04:39 AM
hi, my son has the same on his tongue since he was a few months old. he still has up to this day. when he was a few months old the doctor said it was normal. i dont think it is. my son is 9 years old. it doesn't bother him but i worry because he is gettin older with this problem. but i will look into this more and take him to the doctor again about this. thanks for the information.
Posted by: nina | January 29, 2011 at 12:31 AM
the one Who controls the past controls the future; who controls the present controls the past.
Posted by: Chanel Replica Watches | February 19, 2011 at 05:32 AM
i have too bad experinece like that
my doctor was amazing
Posted by: gerovital | May 19, 2011 at 07:05 PM
Hi All,
I am 49 years old, I started to get the marks on my tongue about 3 years ago. I was very scared about the look on my tongue and the new kind of pain on my tongue that I never felt before. My tongue was inflamed that I bite on my tongue with my teath. I immediately went to the doctor, the doctor send me to a sychatric to relax my mind. The doctor told me that I have Geogrphic Tongue. My tongue was as good as any body tongue for my first 45 years, does GT comes from no where. I been to more than 10 doctors, they all say the same thing. Why did I get this? and how can I get off it.
Posted by: aeid | July 04, 2011 at 10:18 AM
This may be an old post, but I have the same thing. I noticed that they come and go and really I only noticed them within the past few months as being somewhat painful. Being that it is summer now, I've been eating a lot of homemade salsa from our garden. I suppose time will tell when I don't have fresh tomatoes from our garden if they were the culprit.
Posted by: Nick | September 21, 2011 at 03:09 AM
27 female. been having these for 5 years they come and go all the time. I find that when I eat cereal, bananas, candies, salty foods, i feel it coming on right away. sometimes im so embarrassed i dont even open my mouth all the way to speak.. I would believe the acupuncturist but hope that doctors will someday find a cure for this. ive spent years researching online and visiting doctors who say the same thing.. B12 def. but im not. It seems most likely like its brought on by three main things. STRESS w out sleep. Food ALLERGIES, and HORMONAL changes because I get them close to my period. KEEp this forum going.. it hasnt been updated since 2009;
Posted by: Nik | December 04, 2011 at 11:23 AM
I don't think people should be so quick to write this off as geographic tongue!!! That's what my doctor did for 18 months until it got to the point where my tongue got so swollen and sore I could eat and had trouble talking! I am still no where near a diagnosis and have a whole line of test lines up as well as dealing with the side affects of steroids to keep my tongue issues at bay! Sorry but hearing geographic tongue makes me angry, I think all other symptoms need to be taking into consideration before that diagnosis is thrown out there!
Posted by: Nic | January 20, 2012 at 01:36 PM
Iron deficiency and B12 deficiency are very similar in symptoms. B12 deficiency can also cause this, sometimes combined with folic acid deficiency. Especially common in children of vegan or vegetarian mothers. Possibly remedied by consumption of supplements but a blood test is advised to check B12 levels first of course.
Posted by: V | January 24, 2012 at 01:58 AM
The site he was referring to was Seeking Arrangement, an online network that pairs people possessing resources (“sugar daddies” and “sugar mommies”) with those, usually much younger, seeking them (“sugar babies”).
Posted by: Pinky | June 22, 2012 at 03:56 PM
Ok, so as I was reading a list of your sons symptom it scares me because it is exactly every symptom my 13 month daughter has. Could you please email me and give me some advice as to what you did to help your child.
[email protected]
Posted by: Danielle | April 02, 2015 at 08:37 AM