Ok, I just want to start a sort of poll. I am hoping it is not just me, but even under treatment for my DI I have a sort of water obsession. My friends and family get a giggle out of it, but hey what can you do?
I like to try new types of water and most of all… I am still in search of the perfect water bottle to carry with me at all times! My friends and family get a good chuckle every time I buy a new water bottle (which sometimes seems monthly).
Just wondering if it is a DI thing or just me being weird:)
I’m a little picky when it comes to my water as well. You know, when you drink as much water as we do, you start to taste it. And some taste better than other. For a long time, I wouldn’t drink Aquafina because I got some sort of metallic taste. I love Deer Park and Smart Water from Glaceau but that one is so pricy! Oh and Fiji is on my top list. I guess, it’s not only you, I’m the same way!> To: anbsolutions@hotmail.com> From: diabetes-insipidus-cpt6612@lists.careplace.com> Subject: [diabetes-insipidus] Water Obsession> Date: Sat, 3 Nov 2007 20:40:11 -0400> >
The way I describe my drinking obsession to friends and family is that it
takes up about 200% of my consciousness if I don’t have any desmopressin-acetate
in me. When I have taken my dose, it knocks my awareness of my thirst down to
about 80% of my consciousness.
I am always, always, always needing ice cold, fountain diet coke. Much more
so than water.
You are not alone!
Steph
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I also really like water. My favourite is Spa Blauw. When I drink a bottle, it’ll be empty in a few seconds (1,5 l).
Liesbeth
My daughter is the one with suspected DI. She loves water. She takes a litre bottle to school with her and fills it up at least once at school. She likes water out of cups, bottles, faucets, the shower… anywhere theres running water really.
I think you should get her checked out before she gets sick. I remember in my case, I went about 3 months before I went to see the doctor. I nearly died, literally. The funny part about it was that I diagnosed myself because the doctors had no idea what was going on with me. I went to the ER 3 times and they said I had some kind of virus (it was during the peak of the flu season). When I told them that I was drinking 5 gallons of water a day (seriously 5 gallons), you know what they said? They said, “that’s good for you, you need to drink a lot of water.” I guess I could say that college did save my life because had I not taken classes in the medical field, I probably would have died.> To: anbsolutions@hotmail.com> From: diabetes-insipidus-cpt6612@lists.careplace.com> Subject: Re: [diabetes-insipidus] Water Obsession> Date: Mon, 5 Nov 2007 16:39:43 +1300> >
I agree with you on that one. Make sure you get a diagnosis soon. I was drinking almost 10 gallons a day at my worst, but I didn’t know what DI was. Finally a doctor mentioned it and I went home and looked it up… I knew that is what I had the minute I read about it.
I will tell you that if they have your daughter do the water depravation test for diagnosis, DEMAND that she is in the hospital when you do it. I was not and like Nini said, I could have died that night from it.
I am glad to hear the water obsession is not just me though:) At least I am not any more crazy than anyone else with DI. It really is nice to know that there are others out there with the same problem. I don’t know why I didn’t join something like this sooner.
We are in the process of getting Nicole diagnosed. Earlier this year I finally found a doctor who has really listened to me and referred me to a specialist at the hospital.
About two months ago she had her first appointment. He took a detailed history and asked alot of questions. He sent her for blood tests and did a series of early morning urine samples. I guess they’ve seen something in them otherwise he would have just written a letter to our doctor and said she doesn’t need to see him again.
Tomorrow she has her second appointment with the specialist. Last time we were there he talked about doing that water deprivation test as a day stay patient in hospital. I’ll post here and let you all know what he says.
That water deprivation test is torture! They left me there for 8 hours and I lost close to 10lbs! Good luck and hopefully she doesn’t have DI.> To: anbsolutions@hotmail.com> From: diabetes-insipidus-cpt6612@lists.careplace.com> Subject: Re: [diabetes-insipidus] Water Obsession> Date: Tue, 6 Nov 2007 18:30:48 +1300> >
The doctor has decided on the basis of one blood test that she doesn’t have full blown DI. However he phoned the head pediatric endocrinologist at Starship Children’s hospital in Auckland. Hes recommended to do two 24 hour urine tests. So thats what we’re going to do.
The doctor wanted to talk to Nicole’s father and grandfather since it was from their side of the family. I emailed them and asked them to get in contact with the doctor. They didn’t. It really annoys me how unhelpful and self absorbed they are.
Hi there
The results of Nicole’s urine collection tests showed that she pees more than an average child of her age. No surprises there. Hes now saying she may have a less severe form of DI?? Is there different degrees of DI??
Anyways, we’re off to hospital for a couple of days at the end of January so the doctors can do the water deprivation test. Neither of us are looking forward to it… Nicole because it involves blood tests and not having anything to drink. And me because it sounds very traumatic and trying to sleep on the plastic couches is pretty much a non event. We’re going to have to take her portable DVD player and hire a whole bunch of DVDs.
Wish us luck, I think we may need it.
There actually are varying degrees of DI. It depends on the severity. What can happen is she could have a decrease of anti-diuretic hormone production, but her body may still produce a small amount on its own. This just means that you will have her supplement with DDAVP, but you don’t have to replace entirely.
Good luck with the deprovation test, I will keep her in my prayers. It really is a torture thing for those that really have DI. I have heard there are other ways to diagnosis, but still haven’t seen anything proven to work.
HeidiA, in response to your original post…I found it extremely amusing!! My eight year old daughter was diagnosed last year with DI and looking back on it, I should have been more intuitive as to why she was sneaking water at night and always wanting cold, cold ice water to drink. She does has a slight obsession with water bottles as well!! We have about 7 or 8 of them. Also, when we went camping last summer and we were picking out their camping treats ( I have a two kids), my son always picks out a family pack of choclate bars while my daughter was deciding between cases of flavoured water!!! Thanks for the post! I guess I’ll just have to get used to new water bottle showing up at my house on a consisten basis!
Well, it is true! My family have come to accept that of all the little things in life I just love water. My dad laughs when we drive by a water store and I drool over the massive amounts of water jugs and filling stations for them. What can I say, it is the simple things!!!
Which I think I have finally found the perfect water bottle for those of you all looking… It is a camelback water bottle. It has a carrying handle and a non-spill spout that tucks in for transport. You can even buy it a little cover to keep in the cold. I have 2 of them in different colors and am thinking about buying a third!
Hopefully they’ll be able to figure something out without talking to that side of your daughter’s family. If anything, i’m sure that they’ll just prescribe her with some DDAVP that she’ll have to take once a day or just whenever she feels dehydrated. Everything will be fine. I’ve only been diagnosed about 4 years ago and I’m doing good. Although I feel tired at times, I’m still doing fine. I wish you and your daughter luck.
Keep those emails coming, I’d like to know what happens!> To: anbsolutions@hotmail.com> From: diabetes-insipidus-cpt6612@lists.careplace.com> Subject: Re: [diabetes-insipidus] Water Obsession> Date: Wed, 7 Nov 2007 14:30:50 +1300> >