From Williamsville, Illinois, USA:
My 11 year old son has been chronically ill for a year. Two years ago he began to gain weight, but not height, and had frequent urination with excessive thirst that was monumental. His pediatrician check urine samples twice, and he thought my son was borderline (in reading other posts, I know there is no such thing) and that he would have to be watched for diabetes. A year ago, the football coach spoke to us again of the excessive thirst, but this time urine and blood tests revealed nothing more than a raised sed rate [sedimentation rate, a non-specific test for inflammatory illness]. About 6 months ago, he began to run low grade temperatures daily, had diarrhea, excessive bone and joint pain, and his eyes had become affected. He has diarrhea, blood in his stools, reflux, esophageal problems, uveitis in both eyes, and optic nerve involvement. He has very easy bruising, we know he has vascular problems, and he has lost 29 pounds to date. Two colonoscopies showed only inflammation in his esophagus.
My son is followed by rheumatologists and gastroenterologists who have diagnosed Crohn's disease and put him on medication, but they have never dealt with the thirst thing. His tests thus far show elevated liver enzymes and sed rate (but not always) and low, though not abnormal glucose levels. His ACE is elevated and continues to increase. He has been anemic, then gets better, and after these "flares" his health deteriorates again.
I am pulling my hair out. This kid has so many symptoms, is more ill than healthy, but he has never had any follow up on diabetes, and I know my job right now as a parent is to insist on it. Could it be possible he has some form of diabetes? He's never fasted, and never had a 24 hour volume test done on his urine, even though he's been hospitalized three times for dehydration due to diarrhea and vomiting.
I know all of this does not sound typical of diabetes, but could it be typical of undiagnosed and untreated diabetes? I'm so afraid of his kidney problems. We live two hours from our doctors, and we've gone broke trying to identify my son's problems. I should mention also that even with his medications he continues to get progressively worse. Please help if you can, we live on a farm with four children, and I swear to you we're not crazy -- just simple people who want simple answers because our youngest son is most unhealthy
There is nothing in this very complex story to suggest that your son has any form of diabetes mellitus. His conspicuous thirst would however be consistent with diabetes insipidus, a condition that in this case is likely to be due to an inability to make the antidiuretic hormone in the base of the brain.
I have nothing to suggest for an explanation of the total clinical picture except that it might all be due to an unusual and diffuse autoimmune vasculitis. I wonder if it might be worth discussing with the doctors the possibility of Sjogren's syndrome secondary to Crohn's disease. The name is important only in that it might suggest other modalities of treatment such as with Cyclosporin A or anti TNF [Tumor Necrosis Factor].
Original posting 26 Sep 2001
Posted to Diagnosis and Symptoms
Last Updated: Tuesday April 06, 2010 15:09:24
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