water deprivation test

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.

water deprivation test

captain starlight

I’ve been meaning to tell you all about Captain Starlight and the Starlight Express Room. These are both programs run by the Starlight Children’s Foundation which helps to “brighten the lives of seriously ill and hospitalised children”.

balloon flower When I was in the hospital with Abigail we were visited by Captain Starlight (two Captains, actually!) in the ward. They did fun things to help cheer up the kids, like juggling things (and dropping them), blowing bubbles, making balloon animals, telling silly jokes and those kind of things that make kids laugh. They can make grown ups laugh too :) I was so impressed with the two guys that came by. One of them did more talking than the other and he really seemed to be able to read people properly. He got that Abigail was shy and kept a distance from her so she would feel comfortable. (This mightn’t seem like a big thing but so many people DON’T get that and can freak her out – she was already suspicious and extra jumpy so I particularly appreciated him noting and respecting her comfort zone.) He also made a balloon motorbike for Kristian and a flower for my mum. (Abby got a butterfly.)

We also went to the Starlight Express Room while we were there. It’s in the hospital but sort of not, as you go through a short tunnel to get into it. It’s all bright and cheery with music playing. There are craft activities to do, or things to play with.. we had a little play with a keyboard, there were also playstations, PC games, and a Wii. There were some people playing a bowling game on the Wii which looked very cool. Abigail and my mum and I made some peg angels at the craft table, Abigail particularly liked using the glitter, I think. Added later: Also, when we visited the Starlight Express room we saw the same Captain Starlight that had visited us in the ward, and he remembered Abigail’s name and Kristian’s, too. He must see so many kids and their families, it’s great that he really *hears* when people say their names and remembers them for later even.

“Starlight is a not-for-profit charity that receives no government funding for its programs and relies on donations to bring smiles to sick Starlight children.” I have seen them doing good things for a little girl and her family who were in the hospital for a relatively minor condition – imagine how much it must mean to seriously sick kids to have wishes granted or a treat for the whole family so they can try to forget about the sick and just enjoy each other’s company. So if you’re the giving kind, I can wholly recommend the work of the Starlight Children’s Foundation.

captain starlight

we’re home

We’re back from the hospital. Incase you didn’t know we were there, my mum posted about it on Sunday and yesterday.

I had been hoping to come home yesterday afternoon but when the endocrinologists finally arrived to talk to us they explained that they could test in one of two ways.. one was to do an overnight fluid deprivation challenge thing or else to just try taking first morning’s urine and blood at the same time. I wasn’t keen on the fluid deprivation thing because that would make Abigail really upset. So I agreed to stay last night so they could get the early urine and blood.

What a fucking disaster that was. The urine bag that they put on Abigail at about 0430 caught only about 1mL of urine, the rest of it leaking straight out into her nappy. The blood that was meant to be taken right after the urine was finally first attempted at about 8.30 or so, and failed spectacularly. They tried to get blood from the cannula that she already had, none was forthcoming. They said they’d go get a phlebotomist to come and draw blood in the usual way.

She finally arrived about 1145. She’d apparently not recieved some of the pages they sent and also got called away on an emergency or something. She poked one of Abigail’s arms and got a tiny bit of blood before it stopped flowing. Daniel and I both cuddled and consoled Abigail through the whole process. She said there wasn’t enough for all the tests they wanted. They tried again to get some from the cannula, which needed to be flushed first, which Abigail doesn’t like. None came out of there. They took the cannula out then finally which was good. Since they still needed more blood they tried the elbow of that arm, and got some more thankfully. Abigail was really upset, I was crying by now too and so was Stephanie because she could see how upset Abigail was getting. We got all the stuff together then and left, and Abigail actually wanted to get into the pram which says a lot for how much she wanted to just leave.

We’re still going with the theory of diabetes insipidus, I believe, and that’s what the tests are aimed at confirming and getting more information on. There are a couple of variations, depending on whether the dysfunction is with the pituitary gland or with the kidneys. Some of the causes are also genetic which I think they want to test for since if it is genetic it would be advisable to have Stephanie and Kristian tested as well. She’s not in any serious danger since we are aware of this and once it’s confirmed and the details figured out, we can get a treatment and management plan for her. Although diabetes insipidus is really not at all related to the more common ‘sugar’ diabetes, like that one it can be easily managed and not cause any big problems. Unfortunately, it is a lifelong thing.

She fell asleep in the car on the way home, we were going to go and see my mum but since she was asleep we just came home instead. She stayed asleep for a good while longer, I expect she was quite worn out from the bloodletting. She was really crying a lot. She’s happier now she’s awake and we’ve had a shower (they offered her a bath at the hospital but she wouldn’t get in it).

we’re home