Nephrogenic Diabetes Insipidus

We have learned a lot about those three little letters, NDI, over the past two and a half years.  I am not a doctor, so understand that this explanation of the condition is based only on my understanding from what I have been told and have read.  NDI is not to be confused with Type I or II Diabetes, which has another surname that means “sugar” and as we all know is associated with sugar levels in our body.  The word diabetes actually refers to our urine, and the surname Insipidus in NDI means “without taste” and is associated with hydration.  Basically, our brain produces a hormone that tells our kidneys to conserve water, which results in our body concentrating the urine with electrolytes and then releasing them.  With NDI, the kidneys do not respond to this hormone, and as a result, water pretty much goes in and straight out, leaving a buildup of electrolytes in the body.  There is no cure for NDI.  We are extremely fortunate to say that it is a manageable condition and Gavin will live a nice long, relatively normal life.  The biggest concerns are sodium levels and hydration.  The initial blood work had shown that Gavin’s sodium levels were extremely elevated, which can cause brain damage.  To keep sodium levels down and excrete other electrolytes, NDI is managed with ironically a diuretic and by simply flushing the body with water.  As a result, Gavin currently drinks about ¾ of a gallon of water in a 24 hour period.  At the end of the day, this isn’t the end of the world.  We all deal with something, at least NDI has its advantages…water is good for you, and a low sodium diet has many other health benefits!  Again, most importantly, Gavin got to come home from the hospital with us.

For a more technical explanation, please see this website: http://www.ncbi.nlm.nih.gov/books/NBK1177/




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