Linda,
What are DDAVP melts? Are those like those breathsaver melty paper thickness
things?
Welcome aboard!
Stephanie
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I have not heard of melts either. If they taste great and work I am in!!!
The official name is "Desmopressin Acetate Oral Disintegrating Tablets"made by Ferring and they are taken sublingually. According to my daughter, they have no taste. Is there DDAVP tablets that you take by mouth???
There is a DDAVP pill that most people take. It is very small and easy to swallow. It comes in different strengths so she can take what is needed as well.
We managed to get a diagnosis when Jack was 6 months but only after we were in hospital for day surgery… I nurse made sure that the doctor took us seriously. They only agreed to take blood while he was out and it snowballed from there. We currently live in a mining town in Australia where it is hot and dry. We are trying to work out where we would move to if Jack can’t cope with the climate. Jack’s father works at the mines and thankfully which means that we can afford me to stay home with him. At the moment he is using a feeding machine and my day starts at 4am and finishes at 10pm. I am hoping to find some parents and patients with this type of DI and try to make Jack as comfortable as possible so that he can flourish like any other child.
Hello Jack’s Mum!
I’m in Melbourne, so I know what you mean about Mt Isa. Not a good place to be thirsty!
Most people on this board have Neurogenic (Central) DI. Did you know there is a separate board for those with Nephrogenic? You can get to it from the Diabetes Insipidus Foundation. Although the end result is the same, the solutions and problems of the two different types are often quite different.
In some ways, it’s better to be in a moderate climate because drinking large quanitites of cold drinks (which lots of those with DI crave) isn’t good. I had untreated DI in Bendigo in mid winter and spent half my time shivering.
Maureen
Jacks Mum diabetes-insipidus-cpt2246@lists.careplace.com wrote:
Hello I’m the father of Emly who was diagnosed with Central DI when she was one year old. She is now 2. We have a great Endo doctor here in Los Angeles. It is her youngest ever case. Her Pediatrician knew about DI but never saw a case in his twenty plus years practice. Hope to learn more from others here on this forum.
I am Bill got DI about a year ago at age 69, I will not tell you how old I am now. I read about all these young children and thank God for waiting so long to strike me with this curse of thirst. I had a tumor on my Pituitary which after 6 months practically disappeared on its own. Still have the ‘skip to the loo’ problem. Spray helps very much. I never use to drink colas but now I crave them, they seem to cut the crud from my mouth. I like to stay up on any new developments on a cure, and any new ways to stem the thirst when I break thru. I live in Seattle
I am Ruth, was diagnosed with CDI in January and am on the spray at night, one spray seems to be doing the trick for me. I will keep my fingers crossed that it continues to do so. I live in South Florida where it gets really hot and humid, so I will see what the summer brings.
Bill, I’m not that good at math, but I’ll guess you’re 70 now, LOL
Have had idiopathic CDI for 7 years. Was under control with nasal spray and I basically ignored it for those years. It reared it’s ugly head 2 months ago with water intoxication and hyponatremia, and I still don’t have it straightened out. My biggest problem is the lack of expertise among the specialists regarding DI in my area. They basically told me to figure out what works for me…right. So here I am!
Welcome!
Curious that it basically managed itself for that long, then became a problem.
Do you know what the difference was? Did you start drinking something new that you were drinking for taste, rather than thirst etc?
Perhaps you DI has improved and you don’t need the same dose anymore. I had complete CDI for 40 years which disappeared slowly over the last three or so years to almost nothing.
If that’s the case, the spray is probably not the best option, as you can’t reduce the dose. The pills are good for that because the tablets (depending on the brand) split easily.
Maureen.
ITeachwithDI diabetes-insipidus-cpt2246@lists.careplace.com wrote:
I drank only water. I had gained 20 lb (didn’t know at the time, but I now believe it was water weight since I lost it when I temporarily went off of DDAVP) so I decided to drink my 8 glasses of water a day to keep myself health and help loose weight. That may be what sent it over the edge, but I think things were messing up beforehand.
I went off DDAVP for several days to rid myself of fluids and was letting loose large quantities and was still desperately thirsty (I only allowed myself ice cubes just to be sure I still had CDI).
I reduced the spray from 2 sprays when I needed it to 1. I’m starting to stabilize, but I’m not satisfied with my endoS yet.
Had a brain tumor at 5. 31 now and just seeking other members who live with DI as well. Been on DDAVP the whole time and now take the pill form. The only problem I have with it is it makes my hands and ankles swell. My hands are really swollen and painful in the summer. Does anyone else have this? What do you do? I just stick them in ice and it helps temporarily.
I have had Central Diabetes Insipidus for 9 years. My DI was caused by the resection of my first Craniopharyngioma at age 19. I have never met or spoken to anyone else living with DI. 4 months ago I started a new job that requires me to find resources for people all over the United States. After finding hundreds of support groups for other people, it finally hit me…some support would be nice.
Hiya I am Caroline, I have had DI for 17 years- there is no family history at all. I have been married for 8 years and have two children. It is the first time I have joined up with a forum for DI, and feel it would be beneficial as I have felt quite isolated with my condition - as have met no-one with it. I take the tablets and forget about it most of the time- but now and then have a few blips, and wish I could talk to someone with it, who would understand better.
Caroline,
My name is Jacki.
My 20 yr old son was diagnosed with CDI 2 years ago. Considered Idiopathic, it began on his 18th birithday. Dont feel alone. I am too now realizing just how many people have DI.
Welcome to the group!
Hi.
I have had CDI for 30 years. I was diagnosed when I was 14 yo. My DI is the result of a severe head injury. I take DDAVP. I used to take nasal spray now on pills.
Would like to talk with others. Any women out there dealing with perimenopausal issues and DI?
Hi,my name is Kim and I have an 11 year old daughter who was just diagnosed with DI as a result of brain surgery to remove a craniophangioma tumor in Nov. 2008. I look forward to any information or advice anyone has to offer.
I am 25 live in california, I was born with DI and was diagnosed at age 7. I am happy healthy and loving life.
Hello, I have a 9 year old adopted son who had CDI. We have been through many doctors and he is now seeing a endroconlogist (sp) but they are over 4 hrs away and have not seen many cases with unknown causes. He presented at 2 1/2 (he was in an orphange) with no know cause. He has been on tablet form of DDAVP since 3 and it seems to work for him. Recently he went for a weekend with my father and drank way to much liquid, after that he complained that his feet felt funny even with an extra dose of meds. Is this normal?
I would love to talk with someone who has CDI and can help me understand what he is going through. He can’t always tell me his self.
Any other kids with DI that also have ADHD?
Tracy