Any Experience with Diabetes Insipidus?

Updated on February 04, 2008
S.H. asks from Santa Rosa, CA
7 answers

My son has been tested for diabetes insipidus and will be going to see a specialist to get some more definitive answers. He is 6 and has had urinary issues since birth, which may have been masking this condition. Is there anyone out there with knowledge and/or experience with this?

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So What Happened?

well, we finally went in for a water deprivation test at UCSF and happy to report that he does NOT have DI. thanks to everyone who responded- the advice and support was wonderful and gave me some more information to make things easier. I am quite the information hound! and do much better when I have a little insight to things. My son went through the test with no problems..not only were we amazed but so was the staff! I am so grateful to have found this place to gather insight from other mom's on so many issues...
hooray!

More Answers

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R.F.

answers from Yuba City on

no experience, except that it is 'water' diabetes. i have diabetes type2.
this looks like a good info source:
http://www.DiabetesInsipidus.org

What is Diabetes Insipidus?

diabainein: Greek, "to pass through"
insipidus: Latin, "having no flavor"

Also known as "water diabetes," it is often mistaken for diabetes mellitus/sugar diabetes. It is a rare disease, not widely diagnosed, in which the kidneys produce abnormally large volumes of dilute urine.

if i can help let me know.
good luck
R.

2 moms found this helpful
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G.S.

answers from Sacramento on

I have experience with Diabetes Mellitus. probably won't be able to help you much, I have been Diabetic since I was 7 and I am now going on 38.

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S.M.

answers from Sacramento on

I am a 37 year old stay at home mom of two girls ages 6 and 4. When I read your question, it brought back SO many memories...back in college I dated (and almost married) a guy with diabetes insipidus. I haven't heard about it for years until now. But not to worry. "Brad" was diagnosed around age 10. He took (and will forever continue to take) medication every day and lived a completely normal life. He was otherwise very healthy, a big athlete, and now married with kids. So there you have it. Totally managable! Good luck!

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K.U.

answers from Sacramento on

Hi S., my name is K.. My sister is a member on here & saw your question which she refferred to me. I was diagnosed with Diabetes Insipidus at the age of 12. I can give you some information & try to answer any questions that you have. I am at work-###-###-####-right now, feel free to call. Or you can reach me at ###-###-#### as well. Don't worry, it's not really as bad as it seems.

Looking forward to hearing from you,
K.

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J.P.

answers from San Francisco on

My father has diabetes insipidus, he is 70 and has had it for about 40 years. He is otherwise heathly, active and trim. He just got back from skiing and snowshoeing for a week. So what I know of it, when it is when managed, the person can live a long and normal life. The medication my dad takes is through his nose, not injected. Good luck with your little guy I am sure he will be fine!

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P.G.

answers from San Francisco on

Hi S.,
My 52 year old brother was diagnosed with diabetes insipidus when he was 5 at Stanford. He took supplement to decrease his pu/pd (polyuria/polydypsia=urinating and drinking excessively)for years. At that time he inhaled the supplement from a capsule daily. He did very well throughout that time and teenage years, then he stopped taking the supplement and now although he does drink and urinate a little more than normal, he has and is living a perfectly healthy life. Again, that was a long time ago he was given that diagnosis. I'm sure the doctors will be able to answer all your questions and concerns. Good luck.

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D.V.

answers from San Francisco on

This may be a difficult one to find many people with experience. (I was surprised you had any so far!) My mother was diagnosed a little over 10 years ago after a couple years of doctors missing the symptoms. She probably developed DI as a result of chemotherapy damaging her pituitary. Has your son had this confirmed with a test yet. In her case they had her stay in the hospital overnight, did not allow her to drink water and checked her blood for a particular hormone overnight. When she was untreated she used to describe her thirst as "wanting to put her face in a watermelon and suck all the water out." She would drink ALOT of water. At the time she was diagnosed there were only 25,000 cases in the US. She was actually living overseas when it was finally diagnosed. I can offer some advice from her experience.

1) Get a good endocrinologist (prob the specialist mentioned). Endocrinology can be an art form. Just like diabetes mellitus (sugar diabetes) your body would normally adjust a certain hormone (in this case vasopression) through-out the day. With DI you are generally taking a medication once or twice a day to ensure your body retains water. Without medication your body does not reabsorb water from your kidneys and you expel it...frequent urination.

2) If you son says he is thirsty. Get him water. It would be good for him to keep a bottle with him when he starts school. When he exercises (sweating) or is in the sun alot he should just drink water regularly.

3) There is a national support group. My mother received a newsletter...You can check online and they may have chat group. I would ask her for you but she passed away 4 years ago...completely unrelated to this condition.

4) DI is something doctors learn about in med school...I learned about it in my physiology class as an undergraduate. It makes a great test question but most doctors will never see the condition and many may forget about it. When ever you see a nurse or doctor about something else and you mention DI we would always follow that with "you know, WATER Diabetes." Sometimes folks hear diabetes and tune out the rest.

This is a very RARE condition. After the initial test...I'm not sure if they do the hospital stay here with kids, again she was overseas, they may also do a CAT scan. This is not horrible, honest. They just usual want to determine if the problem if with the pituitary or the kidneys. Normally our pituitary sends a hormone signal to the kidneys to determine when we should retain water. In my mothers case her pituitary just didn't send the hormone so she took it nasally and then I think a pill form became available.

Again, find a endocrinologist you like. Don't be intimidated by the condition. If this is the diagnosis read-up online and find the support group...oh found them in google
www.diabetesinsipidus.org
My mother was much more comfortable once she was diagnosed and medicated. She didn't have to get up numerous times at night to urinate and stopped drinking a gallon of water at a sitting.

Hope this long message helps. Yet again, this is very rare to wait to hear what the endocrinologists says and it should definitely be managed by a specialist. It is managable. Hope all goes well!

D.

1 mom found this helpful
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