In three weeks, Abigail will be having a water deprivation test. There is a really good layperson’s explanation of it on this website. Basically Abigail isn’t allowed to drink anything and they take blood samples every hour and test any/all urine that she outputs too.
This is basically the definitive test for diabetes insipidus. If/when certain things in the blood and the urine reach certain levels in a certain amount of time, it indicates that the kidneys are not handling things properly and letting too much water leave the body (urine) even though none is entering. At that point they give you a medicine, and whether or not you respond to that tells them which variety of DI that you have – there’s neurogenic, which is a problem with the pituitary gland not producing the hormone; and nephrogenic, which is a problem with the kidney not responding to the hormone. So if the medicine makes you feel better you have neurogenic, if not, it’s nephrogenic. From what I have learned, sometimes more tests will be done if you have neurogenic diabetes insipidus, because they want to figure out WHY your pituitary gland isn’t working right. There are some pretty not-nice sounding possibilities there. And there is also the possibility that if it isn’t producing that hormone, it could be slouching in other departments too.
By all accounts, the water deprivation test is, putting it mildly.. not pleasant. Assuming that the person doing the test DOES have DI, then they’re basically being put on the fast track towards dehydration. Add to that the already extreme thirst you feel and it’s reportedly quite agonising. I’m still unable to decide if it will be worse for Abigail or worse for me. She’ll have all the discomfort, of course, but I will have to watch her doing thing and continue to deny her what her body’s instincts are telling her she needs (drinks) while also probably holding/restraining her for them to take the blood tests all the time as well as trying to convince little Miss OCD that she can use their toilet or potty or whatever it is going to be that allows her urine to be collected, measured and tested. So, quick poll: who do you think it will be worse for?
I am dreading the test but looking forward to it being over and hopefully finally having the answers and being able to move towards getting her a treatment plan that makes her feel better without having to drink so much. (That sounds like she’s an alcoholic, doesn’t it?) I plan to bring lots of things to do while we are in the hospital, make some fresh playdough for her maybe, some books to read, games maybe. We probably won’t even be able to go to the Starlight Room since she needs to be monitored during the test, which sucks and it was really cool there.
There’s a shirt I saw on etsy that I might be tempted to get her if she definitely does have DI. Even though it’s designed as just a funny baby/toddler shirt, I think the meaning is much more humourous when applied to a DI sufferer (insipid diabetic?): iPee. Thinking funny things like that and reading this thread about “you know you have DI when…” helps me to not panic too much about getting through the test. I’d never even heard of diabetes insipidus six months ago but there are other real people who have it and who are laughing about it too.
You go into a public restroom, begin to pee. Someone in the next stall over is peeing and they finish. You continue to pee. Another person goes into the the next stall and pees. You continue to pee. The other person finishes. You stop after three of these.
I took Abigail to the toilet in the shops the other day. They have these parent/child cubicles with a full size toilet and a half-size one, so your kid doesn’t have to wait alone or go in alone. I got her on the toilet and undid myself and peed and she was still going by the time I was doing my pants back up.
You’d be surprised at how much pee can come out of such a tiny girl.