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Diabetes Insipidus

MsLauren86
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Sometimes referred to as "The Other Diabetes," Diabetes Insipidus (DI) is a rare endocrine condition characterized by excessive thirst and urine volume. DI can result in one of two forms: nephrogenic (failure of kidneys to respond to ADH) or central (lack of ADH production) (NIH 2008)
Now 22, I was diagnosed with Central DI at age 7. In consideration of the rare nature of my condition, (in addition to the extent to which DI has affected me) I have had a particularly difficult time growing up without any true peers (in the genuine sense of the word).
I would be very grateful to speak with anyone who has been affected (even indirectly) with Diabetes Insipidus.
Also, if you think that you may be a candidate for this diagnosis, I can tell you that it is a condition that few doctors are very knowledgeable of. My goal is to increase societal awareness of a little-known condition that has affected (at least) one person a great deal. For that reason, I am speaking out.

*Please do not hesitate to contact me!*

-Lauren.

Explore topics in this discussion:

Dizziness Surgery Chronic pain Falls Confusion Stroke Diabetes Fever Anemia Metabolic disorder Constipation Pain Addison's disease Memory Rare diseases Cortisol

43 replies

Nadeen

Has anyone been able to decrease the amount of desmopressin they are taking? My daughter says that over the past week, she has been requiring less and breaking through less often. She was taking one spray before bed and 2 pills at 10 am and 4 pm. Now the spray before bed is lasting her all day until about 4 pm. Any ideas?

zacksmommy

HI MY NAME IS TAMMY. I HAVE A SON THAT WAS DIAGNOSED 2 MONTHS AGO WITH DIABETES INSIPIDUS. HE WAS 20 MONTHS OLD. HE IS NOW 22 MONTHS OLD AND HIS LIFE HAS BEEN CRAZY. EVERY TIME HE GETS SICK WHICH SEEMS TO BE FREQUENT HE HAS TO HAVE BLOOD DRAWN AND MOST OF THE TIME HE IS SICK BECAUSE HIS SODIUM DROPS IRRATICALLY. (IT HAS GONE AS LOW AS 124 AND HIS NORMAL RANGE SHOULD BE 135 TO 140) ON TOP OF THIS HE HAS TO SEE THE ENDOCRINOLOGIST AND HAVE URINE AND BLOOD DONE EVERY VISIT.

EVER SINCE HE WAS BORN I WAS CONVINCED SOMETHING WAS NOT RIGHT WITH HIM. HE SEEMED ALWAYS TO BE SICK HE HAD RSV 2X AND ALWAYS SUFFERING FROM ONE COLD TILL THE NEXT. HE ALSO GOT ALOT OF ROTOVIRUS INFECTIONS. HIS EYES ALWAYS SEEMED SUNKEN IN AND WHEN I BROUGHT THIS UP TO HIS PEDIATRITION SHE TOLD ME I WAS OVER REACTING LOOKING FOR SOMETHING TO BE WRONG WITH MY CHILD. AFTER THAT I SWITCHED PEDIATRITIONS AND SOUGHT A NEW ONE AND WHEN I FIRST TALKED TO THEM THEY WERE SHOCKED ON HOW SICK HE WAS AND NOTHING WAS EVER DONE. THEY DID SOME BLOOD WORK AND JUST SAID HE HAD A LOW IMMNE SYSTEM. THEN ONE DAY I CALLED THEM UP BECAUSE HE WAS HAVING EXCESSIVE DRINKING AND URINATING JUST AS MUCH. THEY BROUGHT HIM IN IMMEDIATLY TO TEST FOR DIABETES BUT WHEN THAT CAME BACK NORMAL THEY DECIDED TO TEST HIM FOR DIABETES INSIPIDUS AND THE TEST CAME BACK POSITIVE. HE WAS AMAZED BECAUSE HE HAS NEVER HAD A PATIENT WITH IT IT JUST HAPPENED TO BE SOMETHING HE JUST READ UP ON. WITHOUT MUCH KNMOWLEDGE WE WERE SENT TO AN ENDCRINOLOGIST. SHE WAS SURPRISED WITH HIS LEVELS AND WANTED TO REDO THEM BECAUSE SHE THOUGHT THEY WERE REALLY LOW AND AFTER A REPEAT TEST THEY STILL CAME BACK THE SAME. HE WAS SET UP FOR AN MRI WHICH CAME BACK NORMAL ALTHOUGH SHE SAID NOT TO PUT IT ON THE BACK BURNER BECAUSE IT COULD BE AN UNDETECTED TUMOR BEING THAT HE IS LITTLE AND THE TUMOR MAY NOT BE SEEN YET. HE HAS TO GO FOR ANOTHER ONE IN 8 MONTHS. THEY HAVE HAD TO ADJUST HIS MEDS AND HE IS ON THE HIGHEST DOSE THAT A CHILD CAN RECEIVE. HE STILL HAS THE URGE TO DRINK ALOT AND AT OUR LAST APPOINTMENT 2 DAYS AGO I WAS TOLD THAT HE IS SLOWLY KILLING HIMSELF BY DRINKING THAT MUCH AND I HAVE TO CUT HIM DOWN TO 40 OUNCES A DAY. IT HAS BEEN A NIGHTMARE AND IT KILLS ME THAT HE CRIES FOR A DRINK ALL THE TIME AND I HAVE TO TELL HIM NO. AND THE FUNNY THING IS HE IS STILL PEEING A LARGE AMOUNT EVEN WITH THE LESS DRINK. LAST NIGHT HE WAS STICKING HIS HAND IN A BOWL OF WATER FOR THE DOG AND PUTTING IT IN HIS MOUTH JUST FOR A DRINK. HOW SAD IS THAT.

I HAVE NOTICED THERE ARE TIMES WHERE HE DOES NOT PEE ALOT AND HIS DRINKING SLOWS DOWN BUT THAT IS NOT TO OFTEN AND USUALLY THE ONSET OF AN ILLNESS...HE ALSO HAS SEVERE PAIN IN HIS LEGS AND HIS RIGHT LEG IS MORE SWOLLEN THEN HIS LEFT. I HAVE BEEN TO THE ORTHOPEDIC DOCTOR FOR THIS BUT IT IS A MYSTERY TO HIM AS WELL. I HAVE ALSO NOTICED THAT HE CARRIES A FEVER 80% OF THE TIME RANGING FROM 99.9 TO 101..HE ALSO HAS A CAPILLARY DISORDER WHERE IN HIS RIGHT LEG HIS CELLS COME UP TO THE SURFACE AND STAY THERE CAUSING A MALFORMATION AND HE HAS HAD GRANULOMAS FORM ON THE BASE OF HIS HEAD( HE IS CURRENTLY UNDERGOING LASOR SURGERY FOR BOTH THESE ISSUES BUT I WAS TOLD THAT NONE OF THIS IS RELATED) I WAS ALSO TOLD THAT HE IS GROWING TO FAST AND THAT IS A CONCERN TO THE ENDOCRINOLOGIST BUT YET NOT TO HIS PEDIATRTION.

I AM SO GLAD TO HAVE COME UPON THIS DISCUSSION AND I HOPE THAT I CAN GET SOME RESULTS BACK TO WHAT MY LIL GUY IS GOING THRU.
THANK YOU FOR READING

Roja

Here's my two cents about DI and DDAVP spray. I was diagnosed in WA in 1999, and have lived in 4 states and 1 foreign country with it. I have seen endocrinologists, neurologists, oncologists-you name it. It is still a mystery to them (although they know why I have it now-Erdheim Chester Disease). Every time I have an appointment anywhere, they ask: how much and how often do you take the DDAVP. I always answer: whenever I need it. SO, I don't take it upon waking or going to bed. I take it in the middle of the night if I'm awakened by thirst (I keep a glass of water by the bed as well); I take it if I start to feel an increased urge to 'wee' (which usually precedes the thirst)-I guess that's what you call 'breakthrough'?, and any other time I experience symptoms that I had before medication-whether it's strong thirst or an extreme need to urinate. I DON'T take a spray when I feel like a drink of water or every time I have to urinate, but as I remember when I was untreated-I take it when I feel those uncomfortable 'urges' and begin to get that 'parched' feeling... (Sometimes I let myself drink a large amount before dosing myself because then I know I've hydrated!) I have one bottle in my bedside table, one bottle in my handbag and one bottle in a cupboard downstairs-I probably have 3 doses (sprays) a day-perhaps one in the night if I didn't get one close enough to bedtime. SIppyGal, I remember feeling like 'great, a chronic disease-that's forever!!!' and getting a bit down at times, but knowing my own body and making sure I don't let DI interfere with my daily activities, I don't focus on my meds at all-I use it when I need it. That's why I don't take it in pill form; I just grab my bottle of DDAVP wherever I am, have a 'snort' and move on... I will not allow them to give me the refrigerated spray as it's not convenient to be near your fridge all day!!!

Lauren,
It is very frustrating when the doctors try to 'figure out' why one has DI. For 10 years the doctors thought it was idiopathic, but when they did an MRI WITH CONTRAST they could see a lesion on my pituitary (and in other places in my brain). It makes no difference whether it's idiopathic or not (unless you have a brain tumor, which hopefully they would see or a lesion like me) because you still treat it the same way-with DDAVP. I have never experienced nausea related to my dosage-although I've always been a bit of a dizzy/queasy person, another mystery-but again, the endocrinologists are just going to do the best they can to make sure her electrolytes, creatinine, etc. are all alright. I've read a lot of advice about taking the pill, but I personally feel much more in control with the spray and take one quick burst when I know I need it... It is possible that your daughter is not allowing herself to have fluids before she medicates? It's important to keep hydrated since the DDAVP blocks your thirst, so allowing yourself to really want to drink a couple glasses of water before you dose again may help. Okay, that's my long 'soapbox' on the spray and how DI and can be a small burp in your life-learn the signs, have a glass of water, spray and go. There will be days when you experience breakthrough thirst and urination, so you alleviate those symptoms, spray and move on... There is no doctor that can tell you exactly what dose you should be taking at what times-your sodium levels (based on activity, food intake, etc.) change individually. Chronic disease can be crippling if you let it-as I say about DI and the ECD that is the cause of it and is far more life-changing, deal with it and move ahead...what else can I do? You all hang in there and take care of yourselves-it's important to be confident that you know your own bodies. Doctors are great, but you must advocate for yourself (and your loved ones)!

triggs42

My daughter was diagnosed with a benign brain tumor in which she went through 4 craniotomies with the 4th being for a shunt placement. In 2006, she underwent radiation to shrink the risedual tumor in which was left. The risidual was in the hypothalamus. Since the radiation she has developed Diabetes Insipidus. The radiation killed her patuitary gland and she now does not produce adrenal hormonesShe has good months and bad. I usually can tell when she has sodium issues because she gets very confused. SHe has been on DDAVP for 4 yrs now and it has helped but in the past few months I question it. She is having issues with being tired, shakey, sore, no confusion but she doesn't want to get out of bed. I need to know what is going on and how can I fix this issue with her before resorting to ER. Her thirst mechanism is not good but we push at leat 4 to 5 glasses of fluids a day. I need advice....I am her caregiver due to the fact that after her brain surgeries she has short term memory and some other medical issues. Please help me help my daughter. She does have an Endo

fmoonlite888

Hi,
I am a mother of a 12 year old boy who has a craniopharyngioma(benign reoccuring brain tumor) the first set of operations we were lucky as he did not develop DI. At the end of May he was operated for reoccurance of cysts that needed to be removed. Since that time he has been in and out of the hospital due to having developped DI. He is still currently in the hospital and I am quite frustrated. He seems to be one of the few cases where his sodium is very difficult to regulate. The slightest change is not good for him. They have done the water testing and have him on strict fluids but any deviation even a few millileters and his sodium will elevate or can go too low.

He has been put on DDAVP orally twice a day but still has break throughs. The latest is that one of the doctors indicated that he most likely would have to reside in a nursing home where he can be monitored 24/7 until he becomes old enough to manage it on his own. I am trying to stay positive but at the hospital they check his sodium every 4-6 hrs and he has a one on one aid with him at all times. I want him to come home and am looking at all the avenues. He will need a nurse to go with him to school. Next need to deal with insurance. I know that they are not going to cover him going to get blood drawn every week.

I looked online to see if they have a machine similar to a glucose monitor but for sodium and they don't the only thing I have found is what they use at the hospital so I contacted the company and waiting to hear from them. Do you have any suggestions? I know that you indicated that you had it since age 7 how did your parents manage? I am very frustrated that with the limited options that we seem to have and lets not even get into insurance what a nightmare! Any suggestions or guidance would be great and appreciated.

mamajess

In Feb of '09 we noticed two things about our daughter Sadie. At first it was the peeing the bed. We have 6 children and the others have had the occasional wet bed, but this was different. The blankets, sheets, matress was soaked. If we put more soakers under her, they were soaked too and it did not smell like pee. She seemed to be peeing water... and lots of it. Then we started noticing her sitting at the fridge water dispenser off and on all day, filling cup after cup and guzzling. We called her great uncle to come over and check her blood/glucose level immediately thinking diabetes mellitus but numbers were normal. We booked Dr's appts just to make sure everything was all right but by the time the appointments came around, she had the flu. She would stand by my bed begging for water all night, peeing to explosion 7-9 diapers/night. She would guzzle 16 oz of water at one shot, vomit it up (flu) and ask for another. It was a nightmare. Twice during this time we took her to emergency and they gave her something to calm her tummy and told me to give smaller amounts of fluid. I dolled it out in 1/4 cup increments along with Diovol, hoping that it would help to keep her hydrated. By this time, we knew something was up. It took 14 days for her to get over the flu and by that time she wasn't eating, only drinking and had gone from 30 lbs to 24 lbs. She was drinking 6-7 litres/day and peeing out the same. After looking online, we were sure it was Diabetes Insipidus. Our children's hospital finally sent her to the pediatric nephrologist (kidney specialist). He didn't even listen to us, just sat back against the counter and told us that we weren't going to like what he had to say and that it was behavioural drinking! I was shocked, angry and afraid. If they were not even going to listen to us what would we do? To make a long story shorter, we continued to press the issue through a botched Water Deprivation Test, and over a month long home "deprivation" which was the equivalent of family torture. The doctors wanted to prove that it was behavioural so sent us home with the advice to limit her water intake to 2 litres/day. Sadie became angry, a biter, hitter, screamer. (She was always the sweetest most obedient child) She snuck out to drink so we turned off the water to the house. She would run outside and drink from the eaves trough when it would rain, she threatened to drink flower vase water, she drank her bath water... I ached to give her what i knew she needed. When the Dr. phoned expecting to hear that her own hormone had kicked in and all was fine, i broke down on the phone telling him that she was down to 2 litres/day but her feet/hands were visibly rough and dry, she was constipated and refused to eat and begged for water all day. He brought her back in for "observation"! I thought "observation!!??" DO SOMETHING! They asked what we wanted done for her and i requested testing of the ADH hormone and to see an endocrinologist. They agreed. (After the Water Deprivation Test they had given her one injection of the synthetic hormone to which her response was miraculous "healing" for 20 hours. When we tried to tell them that and that if her problems were "behavioural" she would have continued drinking, they brushed us off.) My husband asked for an MRI and they refused, but after a long day they agreed and had that done for her as well. We went home. Tests took 3-4 weeks to come back and when they did, the MRI showed that the pituitary was not lit up as it should be if it was producing hormone, and the ADH test came back that it was "undetectable"...a subsequent test revealed that it was detectable but barely. She was started on DDAVP. *tears* We had to deal with a few behaviour issues that had arisen out of the month-long doctor induced torture session, but as things stand now, Sadie is back to her sweet self and LOVES her vasopressin. She is 3 and gets 5mcg in the am and 2.5 mcg in the pm. It has never been sufficient until this week when she got an ear infection. We started treating her with antibiotics and it must have cleared up something in her sinuses and affected the mucosa in a positive way as the hormone is MUCH better recieved now that she has been on antibiotics. So thankful for something that helps. Someone asked about DI and body pain. Sometimes she complains of achy legs... that they hurt when she walks. This only started when the drink/pees started and has continued on despite DDAVP use. Do you think it would be related to the DI? Could anyone help me with questions that would be important to ask her endocrinologist about at the next appointment. She will be going for an MRI in Nov to check for tumors and after that he will be pursuing genetic testing. So far i would like him to retest her other hormones as i read that they can show "deficiencies" at the follow-up visits. Also wanted to ask him to check to see if the blood supply to the pituitary gland is constricted at the next MRI as I've read that idiopathic DI can sometimes be caused by this problem.

MsLauren86

Hi Sippygal ; )
In response to your post, let me first say that I was first diagnosed with DI at the age of 7; I will be 23 on August 5th of this year. (Now that I say that, I realize how quickly that time is approaching.. yikes). But, in any case... I have spent most of my life never feeling "right," which has often been characterized by malaise, fatigue, and a general lack of motivation for physical activity. Despite this, however, I managed to stay active in dance & field hockey (both of which I greatly enjoyed).
Over the years, I have experienced countless physical ailments. If you read over the previous posts, I have remarked on many of them; however, my physical pain has been the most significant. *I mention this because I have long since speculated a connection between the DI and/or the Desmopressin and my symptoms.
As far as your fluid symptoms, I would guess that the problem is likely dose dependent and would improve upon fluctuation by your Endo. Periodically, my Endo. will order a basic blood panel (specifically testing my Sodium levels). That way he can be sure that my dose is still appropriate and that no adjustments need to be made. If these levels are off, you may feel sluggish, fatigued, etc.
I can tell you that coming about the "right" dose for you is not an easy task; it can be a long and frustrating process. Moreover, be sure to find the dose that fits your body (and life) because it is your life, after all.
Best,
Lauren

sippygal

I was just recently diagnosed with DI back in May and just had my 2nd opinion Doc confirm it. My first doc had me taking the Desmopressin pill and the 2nd Doc wants me to take the nasal spray. I still wake up thirsty in the morning and sometimes at night on the pill. I am not quite sure why and I haven't had a chance to talk to my doctor about this. I am kinda curious if anyone has a decreased appetite because they are constantly filled up on fluids??? I am recently just trying to figure out how to incorporate this in to my life and get back to how I was. I was a very active person. Running, sports, the gym and find it hard to do some of these cause i am constantly thirsty and if not drinking during the activity I play catch up later on at night. Has anyone else had this problem??

Nadeen

Lauren : Thank you for your reply. I am going to try to get my daughter to communicate with you directly, as I have been trying to get her to do with her doctor also, because it can be difficult to communicate to others exactly how she feels, when she is the one dealing with this. But in the meantime, all I can say about the idiopathic part of this is that the endocrinologist asked her many questions about head trauma, concussions, etc. but she or I could not recall anything specific. The only thing I could say was that she has played soccer and softball since she was 5 years old and is currently playing softball in college and is an outfielder and has been known to dive really hard to catch a ball. So the only thing we can think of is that the shock of a few falls may have caused some trauma to her brain and damaged her pituitary gland. Her symptoms started last September, just as she was beginning a semester abroad in Spain. They came on gradually and she just noticed that she was more thirsty than usual. Around early November I convinced her to see an English speaking doctor in Spain who tested her for type I diabetes which of course was negative and told her that it was the salty food, dry climate and high altitude of Madrid and she should try to eat less salt and control her fluid intake. When she got home in December she saw our family doctor who did the same tests with the same results. Long story short, and after seeing 3 more doctors (I even called her dentist) and after my many searches on the internet, she saw an endocrinologist who diagnosed her in about 5 minutes. He ordered an MRI of her brain by a radiologist that specializes in reading brain and pituitary tumors and disorders, which was when they determined that her DI was idiopathic. This was just less than 2 months ago at the end of May. She has been struggling to get the medication right since then. She has a second appointment with the endocrinologist at the end of this month, but in the meantime, he has encouraged her to call him frequently to report how she has been doing with the medication. I will tell her to ask to him about trying the pills exclusively rather than the using them along with the nasal spray. Again, thank you for your response and I look forward to learning more about your experience and your knowledge about DI. I hope to get Alyssa to communicate with you and this support group also. Thank you.

Nadine

MsLauren86

Hi Nadeen,
I actually just realized that you had posted; I apologize for the delayed response. (I can't tell you how rare it is to be in company of others with DI). I appreciate you telling your Daughter's story. I would definitely like to tell you more about my own experiences (I certainly do have (and continue to have) many of them)). I am unfortunately on my way out the door, but I will make it a point to write to you later today if that is OK.
If you have the chance to read this post before that time, it would be great if you might let me know the following: first, I'm sure you know that it's uncommon for a diagnosis of DI to occur so late in life; did head trauma precipitate it? You indicate "idiopathic," but as someone also diagnosed with "Idiopathic CDI," I have come to believe it is less a condition with an unknown cause as it is one whose cause has not been uncovered... yet.
Second, you state your Daughter is taking Desmopressin (DDAVP) nasal spray (supplemented by the 4-hr. pill)- why not forgo the spray all together in exchange for the pill? Personally, upon my initial diagnosis @ age 7, I was prescribed the "Rhinal Tube." After discontinuation, I began to use the spray for a number of years; I ultimately started to take the pills, which I currently take (I will be 23 in August).
Nadeen- again, I would be more than happy to talk to you. DI may not be "life threatening," but (in my experience), it has the potential to threaten one's life... it can make one feel awfully lonely and isolated. This fact is much more painful when there are speculations that the medication he/she relies upon to sustain daily functioning is implicated in horrible side effects.
Finally, I am sure you have done your research. I admire you posting here and seeking the experiences of other people. I wish my Mother would have done the same for me. The sad reality is that there is such little research available that, even if I was 100% convinced that the medication used to treat the rare condition we have been forced to live with causes more problems than it was intended to alleviate, the scientific community simply lacks the necessary support to initiate & ultimately perpetuate change.
I am looking forward to hearing from you!

Nadeen

My daughter, 21 years old was recently diagnosed with idopathic CDI. She is on desmopression nasal spray. The endocrinologist prescribed one spray in the morning and one spray before bed. My daughter finds that if she takes the next dose while the first dose is still in her system, she gets flu-like symptoms such as a headache, dizziness, nausea. Has anyone had these symptoms? She has been allowing a complete "break through" before she takes the next dose and feels better, but then has to deal with the excessive thirst and urination at least twice a day and sometimes at very inconvenient times. Also, sometimes one spray in the morning takes her through the entire day to bedtime and sometimes it wears off in the early evening. The doctor prescribed a 4 hour pill for the interim, but that throws off her nighttime dosage because, again she feels that she can't take it until she has a break through or she will feel sick. Any information or experience you have had regarding this would be helpful. Thank you.

MsLauren86

Hi Sharon : )
I am sorry to hear of your struggles- but, know that you aren't alone. First, when you refer to a Doctor... are you speaking of an Endocrinologist? If DI is suspected, you most definitely need to be seen by this type of specialist. As far as locating a physician who deals (or has dealt) with the condition, you might inquire @ http://webapps.ama-assn.org/doctorfinder/disclaimer.do. The 4-5 Endos. who I have seen in my lifetime have all had experience in the treatment of DI (though, in varying degrees)-- depending upon your insurance situation, I might suggest you begin looking for participating providers (i.e. PPO/HMO) before you proceed to the AMA's site.
Don't give up... and don't forget that you are your own advocate. By the way, I know how you feel- hang in there : )

Sharon

I was tested for Diabetes Insipedus several years ago, at a hospital where the test had not been done before. My Doctor found that the results of the test were inconclusive and that at the time there were more urgent things going on in my health, so the test was not repeated.
So now - I've moved to another state, changed all my Docs as a result of that move. My new Doc is convienced that I have Diabetes Insipedus and wants to have the test repeated. But, in her words, "we need a Doctor who is up to the task." I am at best a complicated patient with a complex medical history. Oh, yes, I guess that would be obvious since I've shown up here.
Does anyone know a Doc in NC who has patients with Diabetes Insipidus and has tested for it before? I am willing to consider a Doc for the initial testing in GA, SC, or AL. Anybody?

MsLauren86

Hello ThirstyGirl! Thanks for sharing : )

THIRSTYGIRL

HELLO. I AM NEW TO THIS SITE AND HAVE JUST POSTED WHAT IT HAS BEEN LIKE FOR ME TO GROW UP HAVING DIABETES INSIPIDUS. IT IS QUITE LENGTHY. IT IS POSTED UNDER THIRSTY GIRL. I HOPE TO HEAR SOME REPLIES. THANK YOU.

dizzybee

Betsey -- it is a complication from the pituitary surgery. I had Cushing's disease which was producing too much cortisol and aldosterone. Once they pulled out the tumor, it kind of throws your body in reverse -- so DI showed up...I had 3 out of 4 of the complications he told me I could have the 4th being dead, so i'll take a few shots in the tummy....once they start you on replacement steroids, everything seems to even out (usually).

Betsey

Hi, I just read that you recovered from DI after pituitary surgery, how did this happen? Did you body start making vassoprine on its own again? I have thought that maybe this was possible, but have been told that it is rare. Thank you

graciesmom

My 2 year old daughter was diagnosed with nephrogenic DI about 7 mon. ago. She drinks like crazy and also gets IV hydration at least 3 to 4 times a week. She has always had a large urine output and drank a huge amout of fluid a day since birth. It took the Doctors a long time to figure out why she had more urine output then fluid intake. Now we just let her drink whenever she wants which is all the time, She even gets up 6 to 7 times a night to drink something.

Grace4

I have a friend whose dad-in-law was diagnosed at about 4years old. I think he uses a nasal spray and is fine as long as he doesn't miss doses. He is now a grandpa.

Roja

Hi Lauren,

When I was diagnosed with DI in 1999, they could find no reason for it. It wasn't until I'd tried for 10 years to find out why I have extreme flank/kidney pain occasionally (enough to require very strong pain killers and nausea preventatives), that they accidentally discovered some 'activity' within my pelvis (bone). After many diagnostic CT's, bone scans and MRI's of my brain, etc., they found histocytes in my long bones, my kidneys, my brain and a lesion on my pituitary that they believe caused the DI. Many people with Erdheim Chester DIsease have DI, as well as kidney 'involvement'-although my kidneys work just fine, they are abnormal in shape, etc. (whatever that means). SO, as far as endocrine involvement-the lesion that affected my pituitary, DID affect my endocrine system. The lesions (histiocytes) that characterize ECD are pretty much able to go anywhere-often in the long bones, but also in the brain, behind the eyes, in organs, etc. When I read about the disease at first-I was terrified, but my doctors keep up with me (and honestly, I feel no differently because my DI was the main symptom and I've lived with it 10 years already-the interferon has only slight side effects for me, as well). If you're interested in finding out more about this disease-go to erdheim-chester.org for more information. I know what it's like to have a mystery 'illness' no one can figure out! To have found out I have a weird, rare disease and still not know what causes the flank pain is very frustrating. Funnily enough, since I stopped eating dairy last summer, it has not returned in over 6 months (the longest I've ever gone without an 'episode').

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