My son is 2 and we have been to 3 differant dr’s and i finally found someone to take me serious. My son drinks constantly and he always pees. He goes through a diper an hour. And i am not talking about a little wet, i’m talking about falling off. He usually has 5 to 6 6oz sippy cups before 10:00a.m. That is not including when he wakes in the middle of the night and drinks a cup or 2. I have a question though. He has not done very well today. He is being very upset and he is not drinking very much but he is still going through the diapers like crazy. Can he dehydrate this way? Or does he have to drink inoder to pee. Can a person with DI, not drink and still pee a lot which causes them to dehydrate?
I have neurogenic di and I still urinate whether I drink or not if my ddavp has worn off. I feel fairly confident that you could become dehydrated this way. God Bless Kimbo46
I’m sure that you know DI is not all that common, although in recent years more people in the medical profession have become aware of it. It’s not surprising that those two doctors didn’t recognize it. DI can be caused by some sort of head trauma, although I have no recollection of ever having any sort of head injury. There is a treatment for it that has proven very effective. DDAVP (desmopressin acetate) can make all the difference in the world.
You didn’t say what kind of doctor finally took you seriouslly. Endocrinologists would know the most about DI because it involves the pituitary gland. You may know that with DI the body doesn’t absorb liquids. Taking a drink is like pouring water through a sieve. It’s hard to avoid drinking because liquid output continues even without any intake. The body will start to draw liquid from within, and that can lead to dehydration. DI also has the kidneys working overtime, so to speak.
It’s hard for people to understand what it’s like to be thirsty all the. No amount of water can quench that thirst. It makes it almost impossible to travel anywhere, even for short trips. DI is a miserable condition. I sincerely hope you get some help for your son as soon as you can. I can;t even imagune what it must be like for an infant. Best of luck.
Thank you so much for your advise. He started drinking a lot more after i wrote. I called the dr. and they took a message then the nurse called me back and said there is not way he is getting dehydrated if he is peeing a lot. I tryed to explain to her that if he has DI he will pee even if he doesn’t drink therefor makeing him more pron to dehydrate. Well you know how that goes she new it all. Thanks so much. He goes mon. to see a Endocrinologist. I will keep you updated.
Take no notice of any medical person unless you can be sure they have full knowledge of DI. Better to ask for advice here.
It’s very dangerous for someone with untreated DI (sounds like this is what he has) to not drink if they’re still losing fluids, espcially a two year old. Sometimes you can get so thirsty that your stomach wants to reject what’s coming in.
If you’re concered go to an emergency department and insist they measure sodium, and more importantly simultaneous blood & urine osmolality - that will tell them something’s wrong.
Maureen.
kdjcmom diabetes-insipidus-cpt5912@lists.careplace.com wrote:
Just a note…don’t let this go if the Dr. doesn’t take you seriously!! I just got a diagnoses five months ago after 15 years! What a new life I have it’s so nice to not think about drinking and where is the nearest bathroom after all these years. I had been to the best (so called ) in our state. Just don’t give up! Kim
Ok everyone i have some news from the dr. The Dr. feels like Josh has DI. They are going to start doing some test on him. They did a thyroid test today. They feel like he is to small for his age. He is in the 25% of his age and they start to worry at 50%. His first test is the water depervation test and then they are going to do an MRI. I am just a little crazy right now. But i believe that God is with my son and everything is going to be ok. He had his blood drawn again today and when he saw what they where going to do. He said “no mommy that hurt” and starting holding his arm close to him. I know they have to do this but at the same time it is so heart bracking. Please keep us in your prays. He is just so young. I feel they are catching it now because the Holy Spirit would not let me give up. God just kept promting me and would not let me give up. Thanks Please feel free to leave your words of encouragement. Melissa
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I am so happy to hear that Josh is finally going to get the care he needs=
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You were so right to persist. I know it must have been awful when they h=
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to draw blood, but you’ll see. It’s going to make such a difference in y=
our
lives. My thoughts are with you. =0D
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From: kdjcmom=0D
Date: 09/17/07 16:31:06=0D
To: robbier44@verizon.net=0D
Subject: Re: [diabetes-insipidus] I need some questions answered please!!=
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Thank You so much. I am so happy i found this site. You all are such a great help and encouragement. I will keep everyone up to date and will come when i have questions. They say i may have to weigh him everyday and keep journals of what he eats. So will come on and ask if i have any questions. Thanks again.
Wow i alreay have a question. I have been looking on line but i can’t find it. Anyone know how much DDAVP is going to cost? He will have to have the injections because he is to small for the nasal and the pill.
I can’t tell you how much the injections will cost. You’ll also need syringes and alcohol swabs which aren’t costly. Unfortunately, the DDAVP is very expensive, and depending on the concentration of the solution, only some have generic substitutes. Desmopressin acetate is the generic medication. The problem is that since DI isn’t very common, the DDAVP is like an orphan drug. That means in order to make it worthwhile for pharmaceutical companies to make the drug, it costs us a lot to buy it. Doctors have been prescribing DDAVP for chronic bed-wetters, and that could bring the price down, but I don’t think it has. Bottom line is that it’s going to depend on the drug concentration and the dosage. The rhinal spray I use has 50 doses per vial. One vial would cost me almost $80.00 if I didn’t have insurance. I don’t want to alarm you. Wait to see how much Josh is going to need. It’s possible that if the doasge is small, one unit of the med will last over a long period of time.
who told you that?
He’s not too small for either - a parent can administer the nasal spray even to a baby, and the tablets are virtually tasteless & almost dissolve in your mouth.
Whoever told you doesn’t know enough about it. Is IS very difficult to sound assertive to professionals, but put your son’s needs in the front of your mind & you’ll find the courgage.
Is IS possible they may want to start with injections in hospital, because it is the most accurate way of finding out how long the drug lasts for him; both the tablets and the nasal spray can be variable in how long they last - it can be different for each person, and vary somewhat with each dose.
It may (read probably will) take a while - maybe months before you establish how much of the drug he needs each day and how often, but believe me, you won’t believe the difference in your son once it’s under control.
Good Luck, and keep posting.
Maureen (Aust - DI for 42 years)
(you may get more answers on the chat group attached to the Diabetes Insipidus foundation website. I know Careplace has a lot to offer, but I find it very confusing, and very few seem to be using it. Most people have stayed with the other one.
kdjcmom diabetes-insipidus-cpt5912@lists.careplace.com wrote:
Here’s an up date on my son. He is doing well. Some blood work came back and they said it was normal. They checked his tyroid and they said it was noraml. Yah His app. is still next wed. Thank you to everyone that has been praying. He seems to be doing much better. I’ve even noticed that he is not drinking very much. I have all the faith in the world that God has just completely healed him like i asked. Well i guess i will find out wed. I can’t wait to find something out. I hate the waiting game. 
Thank you all for being concerned about him. It means so much to come on here and be able to ask questions. I gave him some soy milk the other day and he loved it. But of course it went right through him. But i figure i would just give him a few cups a day. Everytime we go to the frig thats what he wants lol 
Thank you everyone. God Bless!!!
Ok the update on my son. I am so sorry i haven’t gotten back with everyone. I could not remember the web site. So i was waiting on someone to post so that it would email me. LOL Anyway, Everything hasbeen great. God as done a miracle. From the beginning they said my son had DI. His very first urine test and blood work were all abnormal. After that i called my church and all of my friends and told you guys what has been going on and asked you to pray for my son. Well all of the prayers worked. My sons water depervation test showed no problem at all. The dr. was very confused. He said my son’s case is very strange. He said he can’t believe his blood work was abnormal one day and normal the rest. He was so sure that josh had DI that he had me go ahead and buy the meds. Well i know what happen, God healed my son. It is so exciting to watch God do miracles through him. Well not sure about the whole thing the Dr. ordered an ultrasound on his kidney’s. Well that came back normal as well. It’s like he is a totally differant child. Thank you all for all of your prayers. He had one more test done. They did an MRI on him last thursday. I should now the results by monday. And i will let you know i promise. But we all know what the results are going to be. Lots of Love!! Boy do i have a testimony