Our son Ben was diagnosed with Diabetes insipidus at the age of 20 months, although I am a registered nurse this is a condition which I knew very little about. After the initial shock, my family and I began searching for information on the internet. We found many sites, some of which were more helpful than others, however there was very little written about how people felt living with the disorder, or having a child diagnosed with the disorder.

The main problem we found was that when people asked how Ben was, everytime we told them that he had diabetes insipidus, people automatically thought that this meant that he had diabetes mellitis(sugar diabetes). This is where the information collected from the internet came in handy, as I was able to show freinds and family information obtained from the internet.

The most helpful sites that we found were 'The Pituitary Foundation' web site, Boots Wellbeing.com, and the Diabetes Insipidus Foundation Inc web site. From these sites I have taken some information and used it to give an insight into the disorder and put it together with my experiences.

Diabetes insipidus is a rare condition affecting approximately only 1 in 25000 people. (Pituitary foundation, 2003) It is a disorder which results in large volumes of urine being produced, which is often caused by a lack of hormone known as Vasopressin. This is an anti diuretic hormone produced by the pituitary gland in the brain. Occasionally diabetes insipidus can be caused by an abnormality in the kidneys, in which they are unable to respond to the hormone.(The pituitary foundation, 2003).

The name diabetes comes from the greek word diabainein meaning 'to pass through' and Insipidus is a latin word meaning 'having no favour' (The diabetes insipidus Foundation Inc, 2003).

In Ben's case he had the type where not enough vasopressin was being produced by the pituitary gland. The condition first came to light when Ben was unwell with what was thought to be a virus, after his condition deteriorated I took him to our local A&E department. There they took a series of blood test to establish what was wrong with him. After one blood test showed that Ben had abnormally high levels of sodium in his blood, the test was repeated. Again the sodium levels were unusually high, so the Drs asked if I used salt when cooking Ben's meals. I explained that Ben was an extremely fussy eater and would only eat baby foods which contained no added salt.

The Drs decided to try a dose of Desmopressin, which is a replacement of the hormone vasopressin.

This drug is administered nasally from where it is absorbed into the body (The pituitary foundation, 2003).

The Pituitary foundation report that "the main symptoms of diabetes insipidus are extreme thirst, no matter how much you drink and the need to pass large volumes of urine." Ben did drink rather a lot but as he is my first child it was hard to know whether he was drinking abnormally large amounts of fluid. Likewise as he is in nappies it was impossible to measure how much urine he was passing and although the nappies did seem very heavy at times not having any other children to compare to we did not know whether the nappies were abnormally full.

Ben has now been on desompressin or DDAVP for over a month and despite initially having daily blood tests his sodium levels have settled down and the blood is only taken once a week. The bloods are taken either by me or by the district nurses, It is taken by finger prick and the blood is collected into a vile to be tested at the hospital for Urea and Electrolytes, to determine what level his sodium is and how much DDAVP to give.