Diabetes Insipidus-Benji's Story

by By Ben's Dad
(USA)

Readers take note Diabetes Insipidus is NOT what others think of as diabetes mellitus, which is the common type meaning "sugar in the urine," and rising blood sugars as we all know of like Type 1 or Type 2. Diabetes Insipidus means bland urine, and the whole background of the problem is unlike that of diabetes mellitus. Here is Ben's story:


Benjamin was a perfectly healthy baby and toddler until shortly after his sister Megan was born when he was 2 1/2. We first noticed that he was craving increasing amounts of water. At first it seemed to be a fascination with the water dispenser at Grandpa's house and the ice machine at the hotel where we were staying until Megan had her passport and clearance to travel overseas (we were serving with the State Dept at various Embassies and Consulates at the time.) But when the behavior continued and worsened after our return to post, we contacted doctors. At first they didn't take it seriously, but soon it became apparent something was very, very wrong, because Benji was becoming severely dehydrated in spite of the huge quantities of water he was consuming. A 24 hour urine collection on him yielded 7 liters of urine... far more than a healthy adult produces! He couldn't drink enough to keep himself hydrated despite making it a full-time pursuit. It was soon discovered that he had lost the hormone vasopressin, which tells the kidneys to reabsorb water, thus he got his first diagnosis of Central Diabetes Insipidus, which has nothing to do with "sugar diabetes". Doctors said that this illness was a secondary one, that something else had to have caused the damage to the pituitary gland. Thus began the search for the underlying cause, which still has not been conclusively determined, but doctors suspect Langerhans Cell Histiocytosis because of certain characteristics of his MRI scans. He's now 6, and has lost three more hormones, all replaced with either pills or shots. He's currently doing well, healthwise, but we know from experience that his condition can worsen critically if he gets ill, especially if there is vomiting and/or diarrhea keeping him from absorbing his pills. Hydrocortisone is the most critical one, since not getting that one can send him into adrenal crisis within hours of becoming sick if we're not able to get it controlled. Just such an event caused him to be hospitalized for three days/two nights, and that quickly led to our family being curtailed from our overseas assignment almost two years ago.

Meanwhile, Benji's Mom, Tonja, was also ill for a long time, but remained undiagnosed after 20 years. Top contenders were some sort of autoimmune disease, CFIDS/FMS, and now a genetic disorder has been under consideration with the thought that perhaps what is making Benji's pituitary gland shut down may be hereditary: same disease, differing manifestations. Tonja dealt with body-wide joint pain, muscle tenderness, excessive day-time fatigue, unrefreshing sleep, and numerous other symptoms, and they got worse with over-exertion and other stressors. She's doing very well today and prays that she will continue to do so. Faith and a passion for her job as homemaker, wife and mother keep her busy. She considers husband Dan, and four children: Nathan (11), Benjamin, Megan (3), and Katie (1) to be her greatest blessings and best medicine.