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.

Comments

[sraun]

Are those as painful as I suspect they are? I get canker sores intermittently (I suspect I've got one developing on the inside of my cheek right now) - nasty things.

Good luck!

[claudia]

They must be. I think his irritability and his loss of appetite stem from those sores. But he seems to be less fazed by the sores than by the diaper rash, if this puts it into perspective.

Medex is working on finding us a doctor. They are really great. If you are ever in need of an emergency health service overseas, they are the ones to go to.

Must put kids to bed now.

[karoline]

Hope you can get some help on your son's illness. It must be so hard,Claudia. It is not boring to hear about.
After looking at your reading list, I read Alexander Mccall book, enjoyed it very much.
karoline

[claudia]

Thank you, Karoline. I still have your Ostheim book sitting on my table here. I really ought to get better organized and send it out soon. I'm sorry...!

Glad you like the Alexander McCall.

[Natalie]

I have a call out to 2 pediatric gastroenterologists, one in Philly and one in DC. Neither knows me, but I figured it can't hurt...

[Kate]

Hi there, I was just wondering how your son is? I came across your blog when I typed in amoebiasis into Google.

You mentioned that you've ruled it out,do you mind if I ask why you thought he had it in the first place? I'm in Australia, my 2 yearold son is diplaying the same symptoms.