Brown wee. That’s the first thing I noticed. Unmistakably brown urine in Thomas, my two-year-old’s, nappy. Of course, I took him straight to the doctor where I was pleased to hear that it was an easily treatable urine infection. Antibiotics would surely do the trick. Just to be on the safe side they also did an ultrasound to check for reflux – a bladder condition affecting 1 in 10 children. But everything looked fine and Thomas was given a clean bill of health.
Thomas seemed to thrive for the next three years. I didn’t notice anything unusual at all. But then, in March 06, I looked in the loo saw that familiar brown wee again. Of course I wasn’t too concerned, assuming it was another urine infection. However, this time the urine analysis showed no sign of infection. But, confirmed there was something else unusual in Thomas’ urine: lots of blood – haematuria – which was causing of the brown colour.
Right now, thank goodness,Thomas’ kidneys are working just as they should be.
So the next stop was a urologist who referred him on to a paediatric specialist. No diagnosis was reached but the general feeling was that there was probably not too much to worry about.
When the problem came back again 2 months later, I became a bit more concerned and started googling Thomas’ symptoms. I quickly discovered a kidney problem called IgAN (IgA nephropathy). To my layman’s understanding it sounded like a perfect fit, but I very much hoped I was wrong.
IgAN is a disease in which a protein circulating in the blood (called igA) clumps in the kidney. Deposits of IgA in the kidney’s filters (glomeruli) cause the symptoms of IgA nephropathy which include inflammation and scarring within the kidney. Over time this can lead to loss of function and ultimately kidney failure.
At this point I panicked and, armed with my googled knowledge, sought a referral to a paediatric nephrologist (kidney specialist) at Great Ormond Street Hospital.
At first he thought Thomas unlikely to have IgAN – the more likely culprit was a benign disease, caused by strep throat, that goes away on its own. But unfortunately the problem didn’t go away and Thomas continued to have bouts of brown urine. In April 07 we took the nephrologist’s advice for Thomas to have a biopsy to see see what was going on inside his kidneys.
Thomas’s biopsy confirmed a diagnosis IgAN. But while it showed tissue inflammation, caused by the protein IgA lining the filters in the kidney, there was no scarring. This was a good sign since inflammation can go down, even go away completely, but scarring is permanent and can lead to loss of kidney function. Right now, thank goodness,Thomas’ kidneys are working just as they should be.
In the summer of 06 I joined an online support group for IgAN based in America . It has been an enormous support, simply learning to understand what the disease might mean for Thomas’s future and talking to other parents of children with IgAN. Thomas’s prognosis is good, with the probability of him having decades of normal kidney function (by which time we hope of course that they there will be a more effective way of treating kidney disease!)