does anyone here have diabetes insipidus

[samscentials]

my daughter has diabetes insipidus she is currently 6 but the size of an 8 yr old and her medication enables her to be dry in the day with help ie staying close to the tiolet and allowing her to drop all and run. but at night she has to wear drynites and gets through anything up to 3 a night if she wakes or a wet bed if she doesn't and the drynite floods or splits open. i would like to know when she grows out of drynites is there another larger product we can buy for her that is a pull up type not a nappy type. also i have spoken to tena lady but they don't do small sized pads that hold large quantities of water they only have small sized pads suitable for dribbles.i have found suitable pull ups in adult sizes but nothing in between.
any help would be appreciated as she has refused to wear the nappy style as she says she is not a baby and doesn't want me to have to get her into it. she likes to do the pullups on her own.

 

[sugarless sue]

Try and find out if there is a continence adviser in your area and speak to her/him. Most local Health authorities have one. Alternatively contact nearest Childrens Hospital and see if they know of any product.

 

[))Denise((]

This looks like a useful website :

viewtopic.php?f=23&t=11071&p=182960#p182960

They have a shop, that sells this sort of thing.

All local authorities (in England) have a Family Information Directory. You can search it nationally at http://familyservices.direct.gov.uk/familyservicesfinder but only until 31st March, but I couldn't get it to work. The search of it also runs from http://www.1bigdatabase.org.uk/search/pkh?pkh_reset=true - it should tell you who your local continence service are.

 

[ams162]

hello

i have never heard of diabetes insipidus but can empathise with the bed wetting my son is 9 and still occassionally wets the bed however before going onto the pump just over a month ago he did it almost every night which was embarrasing for him and frustrating. we used to use pull ups but he hated them and generally wet right through them the same as he used to with nappies we used to end up with a bed full of crystals.

since being on the pump since begining of feb we have had 3 nights only with accidents which is a relief to me and him, as i say i dont know what the condition is but will it get better or will it always be there sorry for my ignorance

anna marie

 

[cugila]

For those unaware of what Diabetes Insipidus is, have a read here.

http://www.cks.nhs.uk/patient_informati ... insipidus#

Diabetes insipidus is a rare condition where the body cannot retain enough water. It occurs in approximately one in 25,000 people and can affect anyone of any age. It is more common in adults.

Diabetes insipidus is very different from Diabetes Mellitus, which is often just referred to as Diabetes

 

[samscentials]

thankyou everyone for your replies.
i have been to the incontanance nurse who can prescribe free but only larger sized nappies, but she insists on starting the proccess again potty training, measuring fluid in and out etcetc. well i didn't bother as we did all that to get the diagnosis from the consultant, not fair for her to do it all again especially as she doesn't want nappies.

 

[cugila]

I don't know if you are aware of this UK Charity, The Pituitary Foundation for all such disorders, including Diabetes Insipidus ? If not there is much practical advice contained there. Seems a very useful resource.

Here is a link :

http://www.pituitary.org.uk/component/o ... /Itemid,1/

They have a support and helpline where you might obtain further information ........

Information and Support HelpLine - 0845 450 0375
Monday - Friday, 9:00 to 5:00

One other thing was your Consultant an Endocrinologist ? Have you seen this person since your diagnosis ?

 

[donnellysdogs]

My dog has diabetes insipidus and I can certainly relate to the problems of problems with quantity and regularity of urinating.

I know that my dog is not human-BUT they do take drops meant for humans......

My dog was wee-ing 3 gallons of urine a day!! Got diagnosed with DI and given this treatment, and she has been perfect since-and now 14 years for a golden retriever that is superb.... only thing we have found causes her problems now is eating pears!!!! (Long story but she loves helping herself to them, and to chewing my pear trees).

The treatment she has which is also for humans is DDAVP. This cost to us is huge, but you would get it on NHS fortunately. We use a small bottle a week, and give Freya DDAVP in the form of eyedrops, although humans use it with a spray up there nose I believe. She has two drops each morning and each night, and from the first day of taking them it has stopped her weeing out of control. According to the instructions in the packet they are meant to help persons with problems wetting at night, and they are actually human medicine. We can't spray drops adequately up Freyas nose, so we were told to drop them in her eyes instead. Currently this medicine for Freya costs £35 a week!!!!!! So the drops are as expensive as gold to us!!!

I do hope that you find this info handy, although I do state that it is treatment that we give our dog!!! But it is a human treatment definitely, one that has just been adapted to deal with our dog.

Best wishes...Sha x

 

[bowell]

Also suffer bladder incontinence from spinal injury

In the day i make as many trip to the toilet as possible to keep bladder empty
also use pads in the day for the odd drip/spill :?
when out i need to use a catheter & collection bag

Night time was a problem as catheter & collection bag would tangle also feels uncomfortable
i was also using nappies up to 4 times in the night keep changing

My urologist has since prescribed some medication tablets (Desmopressin ) that i take 1hr before bed that seems to really help me I notice its used frequently for treatment of diabetes insipidus ?

urologist dept gave me small Bat powered bladder stimulator that is used to help empty
the bladder before bed its like a small hand held massager helps at other times as well

I can now manage with one nappie most nights

I found my urologist have a better range of pads nappies/ equipment to try in hospital,
once you find the right one for you ,will pass the prescription on to your GP /incontinence nurse

I know your incontinence is not same course as mine and there does seem to be more adult supplies around
Have you seen a child urologist yet ?

Bob

 

[bowell]

donnellysdogs
The treatment she has which is also for humans is DDAVP. This cost to us is huge, but you would get it on NHS fortunately. We use a small bottle a week, and give Freya DDAVP in the form of eyedrops, although humans use it with a spray up there nose I

The spay is not advised for humans

Desmopressin nasal sprays have been banned as a treatment for bedwetting by the UK drugs regulator.
http://www.onmedica.com/newsArticle.aspx?id=5d9799b5-5204-4b5a-b04e-e75df4bb158a

 

[sugarless sue]

The trouble with Continence nurses is that they have to follow a protocol for ordering these products. They are pretty intractable when it comes to doing a total volume out put chart etc because, once again it comes down to costs. Continence products probably cost the NHS even more than test strips do so they have to be justified at each order.

Therefore before every prescription for products this protocol has to be done and we never found a way round it ! Every time you needed a different size product you had to go through the whole scenario again, 5 day frequency volume chart and several pages of paperwork !

Unfortunately you may find that, unless you go private and buy your own products your daughter may have to put up with wearing the 'Garment' ( as we call them, doesn't sound as bad as nappy especially to an adult ) I hope you find a solution somewhere.

 

[cugila]

donnellysdogs
The treatment she has which is also for humans is DDAVP. This cost to us is huge, but you would get it on NHS fortunately. We use a small bottle a week, and give Freya DDAVP in the form of eyedrops, although humans use it with a spray up there nose I

The spay is not advised for humans

Desmopressin nasal sprays have been banned as a treatment for bedwetting by the UK drugs regulator.
http://www.onmedica.com/newsArticle.aspx?id=5d9799b5-5204-4b5a-b04e-e75df4bb158a

Desmopressin Spray is not inadvisable for Humans ? The link you posted is from 2007........things have changed since then. It and other derivatives of Desmopressin are available on the NHS as here from the BNF61 (March 2011)

Desmospray® (Ferring)
Nasal spray, desmopressin acetate 10 micrograms/metered spray. Net price 6-mL unit (60 metered sprays) = £25.02. Counselling, fluid intake, see above
Note Children requiring dose of less than 10 micrograms should be given DDAVP® intranasal solution

The cautions for it's use are as follows :

Cautions see under Vasopressin; less pressor activity, but still considerable caution in cardiovascular disease and in hypertension (not indicated for nocturnal enuresis or nocturia in these circumstances); elderly (avoid for nocturnal enuresis and nocturia in those over 65 years); also considerable caution in cystic fibrosis; in nocturia and nocturnal enuresis limit fluid intake to minimum from 1 hour before dose until 8 hours afterwards; in nocturia periodic blood pressure and weight checks needed to monitor for fluid overload;

 

[ams162]

we were offered desmopressin for dylan as he was weeing so much to see if it could help but since the pump i dont feel he needs it so didnt try it

anna marie

 

[donnellysdogs]

Gosh, the posting that said it was banned for human use really started to make me panic as to the reason why, and should I be giving it to my dog!!!! Thank goodness for the later posting!!! It has certainly kept my dog dry and healthy and we have now been using it for almost 4 years without any problems (besides her eating pears!!!!) I was panicked, so thank you for posting that it was old literature going back to 2007!!!!

I know she is only a dog, and not a human, but she is my constant companion and I am hoping to get her in to the guiness book of records for being the oldest living golden retriever-if I can get her to over 17!!!! The DDAVP for us have been an elixir to life!!!!

 

[bowell]

Opps i should have checked BN61 for UK


The latest at MHRH (The Medicines and Healthcare products Regulatory Agency)
Desmomelt (desmopressin): call for Yellow Card

Reminder for healthcare professionals:
* Nasal formulations of desmopressin should not be used for treatment of PNE
* Healthcare professionals and patients should follow closely the advice on fluid intake in the Summary of Product Characteristics and Patient Information Leaflet to avoid hyponatraemia
* Healthcare professionals are encouraged to report all suspected adverse reactions to melt formulations of desmopressin

http://www.mhra.gov.uk/Safetyinformation/DrugSafetyUpdate/CON084707

The spray still has a checked history with FDA :? its 2007 notice seems to be still in Acive

Children treated with desmopressin intranasal formulations for primary nocturnal enuresis (PNE) are particularly susceptible to severe hyponatremia and seizures.

http://www.fda.gov/Drugs/DrugSafety...ormationforPatientsandProviders/ucm107924.htm

BNF61 DESMOPRESSIN spray
also reported; epistaxis, nasal congestion, rhinitis with nasal spray

I take the tablet form and find it works well as a HUMAN Woof!!

Ether way its up to the doctors to prescribe

 

[donnellysdogs]

Woof, woof thanx for info, woof woof....guiness book of records here we come. 4 years ago, we really thought we were going to have to say goodbye to Freya, she even sits by the fridge every morning and every night waiting for her eyedrops (and her treat afterwards!!!). She doesn't budge until she has had them!!! Thanx for the info....Sha xx

 

[samscentials]

yes her consultant is an Endocrinologist and she sees him every 3-4 months as a rule but she last saw him friday and is going back in 6 weeks for another scan.
she is prescribed ditrapan twice daily and desmopressin melts for night time, she has been on these for 2 years. the kids products only hold 215 ml at most but she manages 3x 250- 300 ml during the night and that is with the desmopressin without it i worry she may drown lol. when she has to have a break from desmopressin i put a tena lady inside her pullups and she still manages to leak on the bed.

 

[cugila]

Woof, woof thanx for info, woof woof....guiness book of records here we come. 4 years ago, we really thought we were going to have to say goodbye to Freya, she even sits by the fridge every morning and every night waiting for her eyedrops (and her treat afterwards!!!). She doesn't budge until she has had them!!! Thanx for the info....Sha xx

All sounds good Sharon.

As regards the information it is always best when looking at Meds to check our UK sites as to the position here. Sometimes things picked up on in the States are not what is the rule in the UK or other parts of Europe. Sometimes we are a bit behind with concerns, however all the warnings are from way back (2007/8) and since the prescribing information has been changed it appears to be satisfactory, although it has to be prescribed with care in certain individuals and those with certain conditions. All listed in the UK BNF61.

Good to see the other information though so people can make a balanced judgements about various drugs and other stuff. :|

 

[bowell]

I really know how you/she feels :?

Have you been in contact with any of the pant manufactures ,
Can not be just you thats having this problem ?


Bob

 

[cugila]

Bob.
I do know that both the Melt and spray (DDAVP) versions of Desmopressin are listed as drugs where HCP's should report any possible adverse reactions which could conceivably be associated with them. The MHRH Black Triangle scheme.

I think they are still monitoring things but the results so far are inconclusive. Too many other things may be responsible for adverse reactions to know for sure.