Halfway down the Danube

Elephant in the Room

HIV.

Zambia has over a million people infected with it, out of a population of maybe 13 million.  The adult prevalence rate is believed to be around 15%.  That's a level where secondary effects really show up, even in the stuff that I'm looking at.  (I suspect it's one reason Zambia's microfinance industry is oddly stunted, for instance.)

But nobody talks about it unless pressed.

Compare and contrast Uganda, where it's very much part of the discourse.  The Museveni government's efforts against HIV have been downgraded a lot in retrospect -- it appears Uganda's prevalance estimates in the '90s were inflated, by various people for various reasons, so the drop was much less dramatic than first thought.  But the downgrade has been from "whoa awesome" to "still pretty solid".  HIV came up sometimes in discussions there, and people were pretty open about it.  That was with an adult infection rate maybe a third of Zambia's.  But here?  Nope: just doesn't get mentioned somehow.

Enigma

   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 weak, he was grumpy, he changed.

It was scary.

Desperately seeking

  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.