My diabetes insipidus journey

Hi Sophia;

Yes, having DI really sucks. I was really sorry to hear that people at school treat you badly because of it. I wish I could go to your school and then there would be two of us there, and we could hang out together. But I'm too old for school now  

I hate having DI too, and I've not even had it as long as you have. I agree, to have it for the rest of our lives is really sad. But when I get sad, I think about this next thing I'm going to tell you and maybe it will help you too: I think about how lucky I am that I live today, at a time where there is medication. I think about how life could be worse... if I had to carry around an oxygen tank everywhere just to keep breathing. I also think about how much I love water! I know it's crazy but I think that those of us with DI probably really appreciate the vital importance of water more than other people do. I LOVE water, don't you? I enjoy drinking water as much as I enjoy eating ice cream! Water is essential for all life, and we people with DI really understand this. We have a stupid disease but it kind of makes us a bit smarter, in a way...

I'm also wondering if now that you are older you might be able to try a different kind of medication instead of those pills. A lot of people with DI use the nasal spray and even though you really do still have to remember to take it all the time, it's taken less often. For me it works really well. For younger kids it's probably not suitable but as you are now old enough to write a post on a forum like this, you're probably mature enough to ask your doctor about the posibility of alternative forms of medication. I'm not saying don't take the medication -- just that you and your doctor might be ready to talk about other ways for your body to take it in. 

I don't know where you live Sophia, but I'm in Canada. I'll be thinking of you when I drink my next glass of water. You're not alone here. Bye for now

 

Hi!You are very nice. My dad was born with DI but only was diagnosed with it at age 15!I am glad to know someone else with DI. My older sister and both got it from my dad but she didn't seem to care much about having it. She went to gifted schools and now is getting perfect grades in all honors classes, so most people don't even notice her DI or just overlook it. I have talked to my doctor about getting nasal spray (my dad has nasal spray) but I am not quite old enough. So by you having nasal spray I a, guessing that you have cranial DI. So do I. I appreciate you replying to me and giving me advice. It feels good to talk to someone with DI besides my dad and my perfect sister. Thanks ❤❤❤❤

Thanks for replying Sophia. Wow -- I really learned something from you just now. I had no idea that DI could be 'inherited'! At least you have someone around you who understands what it's like to have DI. I guess you have a lot of drinking glasses at your house... with three people having DI... probably you make a lot of ice too I know for me, when the meds run out and I get thirsty, it has to be COLD water. Good luck to you, best wishes

Hi again! The doctors didn't know that DI could be inherited until my big sister was born lol. If this isn't too personal I was curious what type of medicine you take for DI. We take ddavp , a type of desmopression. I usually take some in the morning around 6:30am, at lunch, and at around 7pm at night. It isn't too much but sometimes in night you wake up and when you walk to the bathroom door, your sister is waiting in the hall for your dad to hurry up and get out lol. Our drinking problem is solved with a sort of water fountain thing in the center of our three bed rooms. We also Have our own water bottles that purify water (like tap water) and keep it cool and fresh. We have carabeaners on our water bottles that attach to backpacks, jackets, purses, ect. After all of the years of my dad, sister, and then me wth DI, we are quite prepares.

Anyway, I wish you the best wishes and a long life! 

Hi again Sophia, -- wow, you three are so wonderfully prepared! I don't think I could have lasted without my automatic filtered-water dispenser on the fridge door... right beside the ice dispenser. Oh how I love both those gadgets. Yes about the water bottles and carabiners too! And like you, I take the DDAVP... I am SO grateful for that drug, but it costs a LOT of money here, about $100 per month. Things could be worse though... there are worse diseases than this, as we know. Best wishes to you too

Hi again! Wow. $100 ! Here in America we get ddavp for free with our medical insurance.  The only reason I found this was to research DI. I barely knew what it was lol. All I knew was that it made me drink, pee, repeat. But once I came on I was so surprised that so many people were like me. There was another family in my city with two cases of DI, but they left. How London have you had DI? Wanna here something gross: When my dad had first been diagnosed in 1970 something, they didn't have the drug ddavp so they had to make his nasal spray out of the liquid from a dead person . EWW. I am very greatful that ours was made in a lab, not a morgue lol. It was nice talking to you. Bye!!! 

We are indeed incredibly lucky in the UK to get these things paid for, the benefits of living in a welfare state.

I'm here to join as well DI for a month post pituitary surgey peeing like a racehorse and drinking up to 5 litres of water a day. On the desmopressin tablets twice a day and 10 mcg and that seems to really have it under control.

Does anybody else partake in a "pee day" essentially a day off the desmo to clear your sodium levels or is this just me?

look forward to hearing.

jon.

My first neurologist told me to wait and take the desmo only after my urine was clear. Did your doctor tell you to skip a day?

Yes my dr. Tells me to skip a day..once a month. .

this was posted a long time ago so I hope you get this. I am currently working on a website with private forums for kids with DI to have a support system with other kids going through the same thing. My son is nephrogenic DI and he was born with it. He is only 4, and he takes alot of medication a day too. He may be getting a feeding tube. He drinks a gallon and a half of water a day. The medication they treated him with is causing kidney failure.  I have been trying for the last 4 years to find other kids and families that have children BORN with this problem because in these 4 years I have found no one. Everyone is an adult that came into this problem due to another underlying issue. This disease gets virtually no attention and gets over shadowd by sugar diabetes and our children suffer because of it

Bill, I live in Southern NH and am exhibiting the same thirst-urination issues. Could you please let me know who your doctor is at B&W? Thank you.

Hi! I am 12 and have DI and I recommend having the surgery. DI honestly isn't that bad. I have had it for 12 years and will have it for the rest of my life and trust me, you'll get use to it. I take 9 pills of ddavp a day and it isn't that bad as long as you remember to take them. You can also have the nose squirt one and only take it twice a day, but I am not old enough for that. I know that just starting out is tough though, I got DI along with Femural anteversiom at birty, so I am use to it. But in the end ask the doctors what is best for you. Best wished, xoxo -Sophia

Hi sophia, the surgery does not remove the lesion. Its purpose is only to take a specimen of the lesion so the doctors can know what exactly it is. but its risky as the whole gland might be damaged leading to more other hormone loss.

Did u went for the surgery? I am very scared now as I also have low testosterone level, although in prescribed range but touching the lower border. I am planning to go for MRI. My doctor advised me for MRI after around 2.5 months which is the schedule checkup day but now I think i should get the MRI ASAP.

I really really dont want my head to be open by doctors.