Our 5 yo dd is suspected to have DI and we are waiting for our appt to have a water deprivation test soon at Riley Children’s in Indpls. I have read the protocol on the DIF website, how else should I prepare her? What can we really expect? Thanks!
i was 14 when i had mine and it wasnt good,besides no water or food they will take blood every 2 hours least they did with me.just make sure they put port in to draw the blood from so they dont stick her but once i was on my 4th stick before the doctor had a fit and yelled at the nurse for not doing it.they will also be weighing her ever so often and monitoring urine output.hardest thing for me was no water omg…i was ready to drink from toilet or take a nurse hostage till i got water.
good luck and god bless, Lisa
Yep. What Lisa said. There are heaps of ways they can stuff up, but in terms of your daugher’s comfort, putting the line in while she is still fully hydrated is important. I’ve seen Riley’s mentioned a number of times on the other DI board and never in a negative way, so that’s something!
It’s great that you’ve read the protocol. I would just stress a few things: don’t let them start it any other time than 7 - 8 in the morning and there should be NO fasting beforehand. They MUST weigh her at the commencement of the test, after she’s emptied her bladder. They MUST take blood at the beginning of the test also.
Unfortunately it’s impossible to know how long it’s going to take: if she has complete DI it will be over in a few hours, if she has partial DI it can take a day. Don’t let the nurses tell you how many hours - they don’t know.
Make sure they show you the test results as they go. Make a note yourself of her weight each time (test should stop at about 4% body weight loss). Ask for the sodium levels after each blood draw (test should stop if it reaches top of normal range - about 145) etc etc.
The diagnosis is available immediately at the end of the test - don’t let them tell you you need to make an appointment ‘in a few weeks’ to discuss it the results with the doctor.
I know this sounds like a negative attitude towards the professionals responsible for the test, but I can’t believe the number of times I’ve read of people going through the test to find it’s been mucked up in some way. It’s not as though it’s new - I’m 55 and I had mine done (also at 14) in exactly the way the protocol specifies.
As a parent I also think this is a perfectly justifiable circumstance for bribery - a big reward at the end.
Good luck; let us know how you go.
Maureen.
darkangel62 diabetes-insipidus-cpt8661@lists.careplace.com wrote:
I was diagnosed with DI when I was six so I was around the same age. The ONLY thing I even remeber about the test is the water deprivation. Not being able to drink anything was the worst thing about the test. I was sooo desperate to get water it was unbelievable. I would go into the bathroom and pretend that I was washing my hands but try my best to get drink the water. I am 22 now and I don’t remember anything about getting blood taken which goes to show what left a mark. I remember that my mom gave me lollipops which helped a little bit. I’m not sure if they will let her do that or not. If she does have DI the lack of water is going to be hard on her, have a big bottle of water ready for when the test is over.
rgamble diabetes-insipidus-cpt8661@lists.careplace.com wrote:
Hello,
What can I say that hasn’t already been said,
Actually, I didn’t like my experience either, 3 years ago, told my hubby it was going to be a boring procedure and not to take the day off work, boy, I wish he had been there! 9am-3pm with no water, I had a panic attack with full shakes every hour while the nurse held my hand, and the relief I had was splashing my face with water every 15 mins, not drinking a drop (serious self control), and smelling a fresh bunch of lavender I brought from home. I had to keep all the wee in containers for the doc to see, several blood tests during and a 2lt jug of chilled water as my reward at the end!
I weighed 2 kgs less after 6 hours and went down two belt holes, incredible!
Hope this also helps you be prepared for the event, I will pray for her!
All the best!
Roni
Wow, a port would have been wonderful. Yes, when I had mine done, they stuck me. First, they goofed up and didn’t tell me to go off of the DDAVP they had put me on far enough in advance (novice doc), so it took 10 hrs, 6 blood drawings for the test to be inconclusive. They did it again and found that I was positive as soon as I had walked in the door. However, I was there for 7 hours, 4 blood drawings (all while VERY dehydrated - and I have small veins). The reason…the couriers were behind running the stuff to the lab and the lab was behind. Six hours to run a test.
Lesson: make sure the doctors know what they’re doing and that the labs are on schedule!!! oh, and 10 hours is a little too long…start questioning at 6.
You poor soul! As if the fluid dep test is not bad enough on its own, without going for longer than it should.
Even six hours for someone with complete DI would be way too long - I had two - one when I was 14 and the other at 24, and both ended within three hours due to the amount of fluid loss. One of the criteria for stopping the test is losing between 3 - 5 % (depending on which protocol you read) of your body weight, and that’s something the person themselves can monitor.
Maureen.
ITeachwithDI diabetes-insipidus-cpt8661@lists.careplace.com wrote:
Thanks for the sympathy!!! It’s nice knowing there ARE people that exist in this world that know what I’m dealing with and have gone through! So many people just don’t get it. I guess it’s the same with any “disease.” But, what doesn’t kill us makes us stronger :o)
right?