Diabetes Insipidus… huh? Let me tell you, it took me about 4 months of NICU to figure out how to even spell it – and I think I said it wrong for just as long.
So you have to monitor his blood sugar? Ummm… that was my first question too! No. That is what is called Diabetes Mellitus. Confusing right?
What is diabetes insipidus?
According to the National Institute of Health (the big dogs) –
Diabetes insipidus (DI) is a rare disease that causes frequent urination. The large volume of urine is diluted, mostly water. To make up for lost water, a person with DI may feel the need to drink large amounts and is likely to urinate frequently, even at night, which can disrupt sleep and, on occasion, cause bedwetting. Because of the excretion of abnormally large volumes of dilute urine, people with DI may quickly become dehydrated if they do not drink enough water. Children with DI may be irritable or listless and may have fever, vomiting, or diarrhea. Milder forms of DI can be managed by drinking enough water, usually between 2 and 2.5 liters a day. DI severe enough to endanger a person’s health is rare.
We have what is called Central DI – which just means that it was caused by damage to his hypothalamus – the part that tells the pituitary glands to produce the hormone that regulates kidney function. There are several kinds of DI depending on how you got it. From the people I have met in support groups it can be caused by any number of things including brain tumors, stroke damage, accidents where head trauma occurs, and in some cases its even genetic!
Since the NIH considers it a “rare disease” I was shocked to find so many people online that deal with this on a daily basis. Some are parents of kids, some are adults and some are as old as 60 and have been dealing with it all their lives! So if that’s the case why hadn’t I EVER heard of it? Guessing that’s where the rare part comes in.
What does that mean for us? How do you treat it and manage Diabetes Insipidus?
Well I wish there was a magic little machine like those for blood sugar that could test for blood sodium, alas it could never be that easy. The most common treatment for DI is a synthetic hormone to replace the one the brain is not making or not making enough of called DDAVP or Desmopressin Acetate. I was under the impression it only came in a nasal spray, however I have learned in support groups that it can come as an injection, pill, or spray! Thank God for options!
So every so often, sometimes more often than not, we find ourselves at our Endocrinologist office. For those of you new to the glands and hormones world, they are ruled over by a person in a doctor’s coat called an Endocrinologist. Endocrine system is the body’s transport system for glands – something I so desperately wanted to forget from health class. I never did like that word, it always sounded funny. We call them Endo’s, easier to say, easier to type – done. So back to the information. We find ourselves sitting in an office, as often as needed, getting labs done. Our Endo is great, we have a standing order for labs which means anytime Mom or Dad is paranoid or something feels off we don’t have to run to the ER to get bloodwork done (do you know how many germs are in an ER? I mean SICK people go there!! I hate the ER) we can go straight to our Endo’s office and have labs drawn and he was even sweet enough to mandate they get run STAT! Everyone in that office is aware how crazy this paranoid Mama can be when it comes to DI.
Superman is a hard stick – but we have two great phlebotomists that can draw him quick and fairly painlessly. Makes life so much easier. That’s a HUGE thing in our world. Just for comparision: when he was 6 months old, we went to the ER and they literally blew EVERY vein including two in his head trying to get in IV in, finally the last one left in the side of his foot won. We had issues getting blood the rest of the six day hospital stay. Its pretty serious for us when it comes to getting stuck.
Now here comes the part where what I think differs from the NIH. I guess in one hand they are correct about it not being life threatening, however the side effects that the disease causes can be deadly. Water toxicity is one major issue that can go severely wrong quickly. Water can’t be poisonous can it? Absolutely. When they say everything in moderation that includes water. Drinking too much water can cause your body to go into electrolyte shock, cause seizures as well as cause your brain to swell. Its like a REALLY bad water trip. In our case we have to be double careful about dehydration as well because the seizure meds he is on can cause issues if he becomes dehydrated, which when his electrolytes are off he can dehydrate quickly.
Life with Diabetes Insipidus can be quite a tightrope walk. Especially mixed with all the other conditions our Superman has. Some days it feels like a bomb just wired to go off. And some days we can forget he has it until meds.