Today’s letter is K, and I am cheating just a bit.  The actual name of this disease that affects children is ‘Chronic Kidney Disease.’  This is an important topic to discuss since   over the past twenty years the incidence of Chronic Kidney Disease has continued  to increase, with poor and ethnic minority children disproportionately affected.  This means that there are many more families attempting to find their new ‘normal’ with their child with a chronic illness.  So, in this post, I will be discussing the ‘how to’s’ for the parents. It is normal to feel frightened and confused when they hear that their child has been diagnosed with Kidney Disease.  The most important thing to do at this point is to find out as much as they can about the disease and develop some ways to cope with the day-to-day issues of life with a chronically ill child.

It is important that the parents understand that they did not cause their child’s disease.  So, what is Chronic Kidney Disease?  CKD is a term for many conditions that affect the kidneys.  Unfortunately, it usually means permanent and progressive damage to the kidneys.  The most common causes for CKD in children are anatomical/structural abnormalities or genetic disorders.  The damage to the kidney’s filters, the glomeruli leads to chronic kidney disease.  When the disease is diagnosed  and treatment starts early, the complications, growth and development and the quality of life of the child improves.  The kidney’s functions are critical in the body by controlling water levels, eliminating wastes and toxins.  They also regulate blood pressure, red blood cell production and the levels of calcium and minerals.

In the beginning, CKD may not cause any symptoms for a while, or could be subtle such as, mild puffiness around the eyes or foamy urine.  Other signs that the family may become aware of are swelling of hands and feet, nausea and vomiting, fatigue and loss of appetite,  and blood and/or protein in the urine.  If Chronic Kidney Disease is left untreated, there will be high blood pressure, anemia, stunted growth, and nerve damage.

It is important for the parents to explain to their child about their disease as far as is age appropriate.  He/she must feel comfortable asking questions, whether to the doctors, nurses, or any other medical staff.  Give the child information about any tests or procedures, but never lie.  The child needs to know that everyone involved in his care are on his side, even when that means temporary pain and discomfort.

There is no cure for CKD, but the progression for the disease is often slow, and there are two ways of treating end-stage renal disease.  One is through dialysis, and the other is kidney transplant.  It is impossible to know how quickly CKD will progress to that stage when dialysis or a transplant will be imminent.  The parents may question if it would be better for their child to have  the transplant sooner than later.  But, the truth is that a transplanted kidney from a live donor will last for about twenty years and ten years for a kidney from a deceased donor.  The best thing to do is not to have the transplant until it is vital.  There is usually questions from the parents about how they will pay for dialysis or a kidney transplant.  In 1972 Congress passed the End Stage Renal Disease Act, ensuring that Medicare will cover dialysis and kidney transplants for anyone with end-stage-renal-disease who is eligible for social security, including children.

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