Current State of Affairs

Well its been quite crazy around here. If you follow the Facebook page ( you have seen that we are currently fighting insurance on one of Superman’s medications. Right now, they are denying his Desmopressin Acetate injection (DDAVP) due to a conflicting diagnosis – hyponatremia.

Which is stupid. Let me prove my point.

Hyponatremia is a condition in which the amount of sodium (salt) in the blood is lower than normal. (MedlinePlus)

Fluid Imbalance

Your body is constantly losing water through breathing, sweating, and urinating. If you do not take in enough fluids or water, you become dehydrated.

Your body may also have a hard time excreting (getting rid of) fluids. As a result, excess fluid builds up in the body. This is called fluid overload (volume overload). This can lead to edema (excess fluid in the skin).

Many medical problems can cause fluid imbalance:

  • It is common to retain large amounts of fluid for several days after surgery (causing swelling of the body).
  • In heart failure, fluid collects in the lungs, liver, blood vessels, and body tissues because the heart does a poor job of pumping it to the kidneys, where it can be eliminated.
  • When the kidneys do not work well because of chronic kidney disease, the body cannot get rid of unneeded fluids.
  • The body may lose too much fluid due to diarrhea, vomiting, excessive blood loss, or high fever.
  • Lack of a hormone called antidiuretic hormone (ADH) can cause the kidneys to get rid of too much fluid. This results in extreme thirst and dehydration.
A fluid imbalance is often associated with imbalances of sodium (hyponatremia, hypernatremia), potassium (hypokalemia,  hyperkalemia), and other chemicals that help regulate body fluids. (MedlinePlus
What is Central Diabetes Insipidus?

Central DI

The most common form of serious DI, central DI, results from damage to the pituitary gland, which disrupts the normal storage and release of ADH. Damage to the pituitary gland can be caused by different diseases as well as by head injuries, neurosurgery, or genetic disorders. To treat the ADH deficiency that results from any kind of damage to the hypothalamus or pituitary, a synthetic hormone called desmopressin can be taken by an injection, a nasal spray, or a pill. While taking desmopressin, a person should drink fluids only when thirsty and not at other times. The drug prevents water excretion, and water can build up now that the kidneys are making less urine and are less responsive to changes in body fluids. (NKUDIC)

All of this information and more was found in less than 5 minutes on Google. – From REPUTABLE medical sites. So why they can’t use Google to find out that this is the only treatment available I have no idea. The doctor says so – the NIH says so… 

They got a conflicting diagnosis of hyponatremia from a hospital stay where Superman was hospitalized with life-threatening pneumonia caused by metapneumovirus – which caused him to be very ill – and in that 9 days his fluid balance was affected by MANY factors including the fact that he was very, very ill. And his endocrinologist was there twice a day with phone calls every six hours with lab reports to adjust meds as needed while he combated the respiratory virus which caused high fevers, hypothermic temperatures, sweating and vomiting and diarrhea – all of which affect fluid balance (as referenced above). All they see is black and white print from a 9 day hospital stay summarized into a few sentences.

Without this medication – his DI is severe enough because of the brain injury that without it he will literally excrete every drop of fluid in his body without regulation.

Essentially, his body would dehydrate itself.

You don’t come back from that.

They don’t seem to understand that.

Its incredibly frustrating these current state of affairs.

Please keep us in your prayers.

To read more about our Diabetes Insipidus – click here


Back in the Groove

It has been a long summer. Moving, getting set up, settling in – general craziness. We STILL aren’t unpacked fully and the holidays are upon us. I am going to be leaving my blog open on my desktop (much to the dismay of my IT inclined husband because my 50 windows open slows the network considerably). Hopefully this will make it easier to stop updating you all in my head and actually get it down on paper (so to say).