I've Had Cranial Di My Whole, Would Love To Talk To Women About Pregnancy With Di....

Hi all,

I am a 26 year old female from Melbourne, Australia. I was diagnosed with cranial/central Diabetes Insipidus at 2.5 years of age. I have absolutely no family history, no pituitary tumour, no brain trauma, and no other health conditions, endocrine or otherwise. My DI was listed as "unknown cause" until a few years back when I had genetic testing done at the urging of my endocrinologist. Turns out, it was caused by a spontaneous genetic mutation which occurred when I was conceived.
I have a 50% chance of passing this mutation on to any children I might have.

My DI is managed with Desmopressin Acetate nasal spray (Minirin), and I've been really lucky in that I haven't really had any major issues due to this condition, apart from the occasional bout of leg cramps caused by electrolyte imbalance if I've left my meds at home and been up all night guzzling water and peeing like a racehorse!
Recently, I've noticed that the nasal spray is less effective than it once was, and only lasts around 20 hours, rather than the 24hrs I used to get. I am reluctant to keep increasing my dosage, as I am already at 2-3 sprays per 24hrs, and the maximum safe dosage is 4. I'm not sure what the cause of this decrease in efficacy, I am wondering if it has something to do with damaged nasal mucosa from...lets face it...."20-something years of snorting drugs" (as my friends like to say). A childhood specialist did warn this could happen eventually. I have tried the Minirin tablets before, but didn't find them as good. I may go back to them soon in order to test whether the problems I am having with getting the drug to "last" is actually due to absorption problems in my nose.

My main reason for seeking out this site is to talk to other women with Cranial DI who have experienced pregnancies and childbirth. My partner and I would eventually like to have a baby (or 2), and I'd like to know how they fared, especially what advice they were given when it came to the medications used to treat DI, namely Desmopressin. I haven't found many studies about using this drug during pregnancy and breastfeeding. Were there any additional precautions you had to take, any complications or side effects from the medication, did you suffer through 9 months *without* using Desmopressin and subsist instead on huge quantities of water, and electrolyte replacements? Did you breastfeed while using Desmopressin? I'd love to hear from you, whatever your experiences!

If anyone has any questions, please get in touch. Thanks! :)
Roxy3107 Roxy3107
26-30, F
6 Responses Jan 20, 2013

I have had DI for 27 years and have had 6 live children and 2 miscarriages. I am happy to answer any questions I can if you still have them!

Hi, I'm currently in my second trimester of my second pregnancy. I'm almost 25 years old from Sydney. I take the minirin tablets and am currently on 4-5 a day (recommended not to exceed 6 per day). Minirin is 100% safe during pregnancy and breast feeding. I Breast fed my first born for 6 months and intend on doing so with the next. The only problem I have come across during pregnancy is that I am thirstier and go to the toilet more often (which is common in pregnancy anyway). My endo told me that because there is more stress on the body during pregnancy, it's a given that I may be more thirsty. So I have upped my dosage to 5-6 tablets daily. Apart from that everything else is great. U may want to speak with your endo about it before trying for pregnancy, or just let them know as soon as you are pregnant incase they need to adjust your dosage. I was also told that I may need to switch to the nasal spray if I get
Morning sickness because I will be throwing up my tablet. Thank god I dodged morning sickness so I was able to keep everything the same. If you already use the nasal spray though, that won't be a problem for you. I hope I've been of down help, and I'm sorry the response is only a year late lol, I've only just joined to this forum. If you have any questions don't hesitate to ask :)

I would love to answer all of your questions. I have two children. I have used desmopressin for about 20 years or so. Please ask away i would be more than willing to share my experience with you.

Hi There
I am 33yrs from Ireland .I was diagnosed with D.I. at the age of 2or 3yrs ,Like the above there absolutely no family history of D,I.. Im the only one in my family of four to have D.I .It is down to genetic as i was tested .
I have been taking D.D.A.V.P. Demopression 0.1ml 3or 4 time a day and it works for me well most of the time anyway
At the age of 19 I had my first daughter and suffer no complication during the pregnancy, the only thing when you tell other doctor you have D.I they always say do you check your blood sugers and that used to drive me mad ! . After my daughter was born straight away things were not right as she was not putting on weight and had very wet nappys (dippers) .Had her at the doctor nearly every week .
I told them that she could have D;I. as did my parents as they said she was like me when i was young .Long story short she did have D.I she diagnosed at the age of 2 .She also taking D.D.A.V.P Desmpression 3 time a day .It was hard at first with the sodium dropping but once we got the dose right she was grand .We also went on to have 2 more daughters whom also have D.I. They are used to having D.I now and are doing great and also do lots of hobbies and do not let it stop them .

It good to read about other people with D;I as I know no one with it ,They say it very rare well it not all that rare in my family !! Sorry cant be of more help but if you do go on to have a family just enjoy it and dont let D.I. stop you . Sorry I did not breastfeed .
Good luck with everything xxx

I do not have any children, but I do have DI and have wondered the same things! My aunt has DI as well and took her DDAVP nasal spray throughout her pregnancy with my cousin. Granted, this was 37 years ago, so I'm not sure what the doctor recommendation is now. I have an appointment with my endocrinologist next week, so I will ask about pregnancy/DI and will report back to you.

In regards to the medicine... how long did you try the DDAVP pills? I tried them when I was younger, but didn't find they were as effective as the spray, so I switched back. However, my dad and two brothers have switched to the pills and finally got me to try them! I am on week 4 of using the pill-form and feel like I have a good rhythm going. I take 1 pill at 9am, 3pm, and 9pm. I was waking up during the night, most of the time, but find that this is not happening as often as it did the first 3 weeks of taking the pills.

Just a side note: my familial DI has been traced back to Australia, which is where my grandmother's family lives. :)

-Brooke

Thanks for the reply Brooke!
I am also supposed to be visiting my endocrinologist at some stage, but I keep putting it off because it's expensive and the only thing I want to discuss is safety when taking DDAVP during preg/breastfeeding. We are not planning on becoming pregnant for another year or more, so I keep thinking "it can wait".
I'd be really interested to hear what your specialist advises. :)

PS - I took the Minirin tablets for about 6 months in 2007. They were ok, but I found them harder to manage as I had to take them more often and struggled to keep the dosage balanced. I was living in the UK at the time and having a bit of a party life, so the odd sleep/wake hours probably didn't help. I suspect if I tried them again now, I'd probably have a better time.

Ooops, the title is supposed to say "My Whole Life"...