I had never heard of it before and strangely enough, few have.
This condition is so rare that Stanford only sees about 3 or 4 cases a year. [a year!] That shocked me.
Once the pituitary gland decides, for whatever reason, to stop making the hormone, vasopressin, your body no longer will hold fluid.
diabetes insipidus, central - A metabolic disorder due to injury of the neurohypophyseal system, which results in a deficient quantity of antidiuretic hormone being released or produced, and thus in failure of tubular reabsorption of water in the kidney. As a result, a large amount of urine of low specific gravity is excreted, followed by dehydration and great thirst; it is often attended by voracious appetite, loss of strength, and emaciation. It may be inherited,acquired, or idiopathic.
This is a life changer for us. Not in a "we can't do _____" kinda way, but in a "we have to be on it" kinda way. Similar in a way to type 1 diabetes. Not the condition, but life just changes. It is doable, but there is change.
Our local medical community will need to be educated. Dawson can not be treated like your typical patient. If you give him a regular I.V. bag and is on the replacement hormone you could overload his body with fluid with severe consequences. If you give him a regular bag of IV fluid and the hormone has worn off, you can dehydrate him no time.
Dehydration is the biggest concern when doing anything medical. A young man died in the UK because they thought he was being a pain and continuously asking for water. He even called the police from the hospital begging for water. This story gave me the shivers. How horrid.
Unfortunately the medical professionals at that hospital did not believe him about his condition. This is a common story among D.I. patients. Dawson will need an advocate all of his life.
Is it permanent? Yes. Unless the Lord would choose to heal him, this condition is typically permanent. We will ask the Lord for healing but deal with this condition with the wisdom and resources God has so generously blessed us with.
We are so blessed to have the resources available to us. How many DI patients die from lack of diagnosing, educating and medicating? [we would adopt any child in need of DI care. btw] Our medical help rocks. They are the best in the world. Justin and I love each Endocrinologist we have had at Stanford.
Speaking of God's provision.
Can I just recall to you the clear hand of the Lord in Dawson's new condition? This was the first year I have ever homeschooled. I had a deep burden, like never before. It was clear, this was the year.
Because Dawson was home he had full access to water and a potty. This kept him healthy. Had he been in school it would have been viewed as a behavior issue. Even being home, I wondered and leaned towards some kind of mental thing :(. My heart is FILLED with gratitude toward Our Loving Father that He knew the guilt for me and pain for Dawson if he had been disciplined over this. Not to mention all the consequences of lack of water or embarrassment an accident… the list is long (very long) of reasons I am so thankful for Dawson being homeschooled. Thank you Jesus, thank you Jesus.
God is so good and worthy to be trusted. Even in the hard of new medical conditions. He is worthy. Worthy of our worship and every inch of our hearts, minds and soul. We will praise Him even for this. May His purposes and plans be worked out though each of us as we adjust daily to this life changer.