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does anyone here have diabetes insipidus

i spoke to tena lady and upsy daisy and they say that most children only suffer from small accidents or are just in transition to tiolet training so it is rare that a child has full bladder regular accidents unless they are wheelchair bound or mentaly ill so they only provide the nappy type for high volumes as a carer would be the one doing the changing. i have said my daughter cannot be the only incontanant child without any other disabilities in the country that is able to and prefers to change herself. but the end answer is that there is no call for high volume pants for older children. i still reckon they must be out there somewhere but where.
 
Sam, I sent you a couple of links about products. What you can also do is to get the smaller Tena pads Extra extra plus or the maxi ones and use them inside the other pants this gives an extra layer of absorption and can stop leaks sometimes. We used to do this at work very effectively until they stopped us 'double padding' because of the cost !
 
When I had a vulnerable adult gentleman staying with us, I had to arrange for him to see a specialist incontinence nurse that specialised in trying to find best ways to manage and to arrange supply of such products. Have you seen such a person? She actually scanned the person in our home, and got him straight in to hospital and for proper diagnosis and treatment, she was a godsend to us, as the poor chap had been in and out of care homes for 1 year before coming to us, and nobody had noticed all the horrendous sores he had!!!
 


i double pad her like that when she has to have a break from desmopressin she has to have 1 week off every 3 months so we do it in school holidays but it is too expensive to double pad 3 times a night every night and she doesn't like it much she finds it hard to get comfy for sleep. when she was a baby she used to wear 2 nappies different sizes, each night with rubber pants she looked like a telly tubby in her baby gro.
 
ohh bless her it must be embarrasing for her, not to mention how tired she must be having to get up 3 times in the night all the kids on here got through so much everyday its such a shame and they all do it with a smile on their faces

sure there must be some sort of option to make things easier for her like u say its knowing where to look isnt it

anna marie
 
yes she is embarassed she is ok at school,they put her desk right by the door and the tiolet is opposite she thinks its quite cool that she is allowed to run out and the others have to wait for permission. if she didn't make it on time she just has to wait in the loo and if shes been gone longer than normal the teacher brings out her spare clothes and nobody knows what happened. at night because she doesn't always wake up or doesn't make it on time she can change pull ups on her own now but if she had to go back into ones with side tapes she would need help again and she's against that idea. it can be embarressing for me too we shop in sainsburys as they have a loo right by the till and in a normal shop she needs to go at least once sometimes 2 before checkout when we first started shopping there i was quizzed by the security guard now he knows us its ok. when we go to other shops and we disapear into the loo i am waiting to be questioned lol
 
yes i bet u are, we always had trouble with dylan in that we would go somewhere and he would wet himself seemed to take forever to get anywhere and travelling was a nightmare but i think his may have been down to high blood readings as now he has better control on the pump its easing up. he went on a school residential recently and i had to warn the teachers pack extra bedding etc he was put in with kids who wouldnt tease him they stayed 2 nights and he managed one dry and one wet so not as bad as expected and the other kids never noticed i told him to cover it up with the blanket if he did it then get the teacher but he was really embarrased and worried about it for a while before. we were offered medication to help but as i say with better control it seems to have eased loads so im not going to bother trying it.

hope u find a solution soon

anna marie
 
incontinence was probably the worst thing I ever had to come to terms with , lost all feeling & sense of urgency so water work wise ,things happen all on there own ,with no control.
the only thing i can do is to Force empty my bladder, at regular intervals ,
Easer when your at home. virt imposable when out

When your out thats another kettle of fish , I can only use the disabled loos that are Few and Far
to find ,then 3 or 4 mothers with pushchairs if front of you :shock:
I Love it when its RADAR locked :twisted:
I jump in right past them , with key in hand sometimes get the odd comment ,
Just say sorry lov its a private club 8)

Anything Public i catheterisese makes me feel a lot safer thus more normal
with no bulky underwear ,Bag on leg can empty with tap when i wish, and not my bladders

Completely Ignorant here being male ,Would that be an option for you Later on?
Sue would know more : Help!!! im digging myself a hole here

Do you have a radar key? would that be useful for you ?


Bob (still dry) :wink:
 
i sometimes wish she could be catheritised it would make things so much easier but its not an option and she can't get a radar key because of her age and that she technically is not disabled. they told me it was for blue badge holders. but i think all people that need a loo fast should get one. surely people that are incontenant should get access to radar loos. but hey thats another argument.
 

Not sure why you cannot get a Radar Key ?? Age shouldn't come into it and from what I have read it isn't just for Blue Badge holders either. It appears they are available to purchase and you can decide if you want to claim a VAT Exemption or not. It looks like anybody can buy one online ? I have just checked out one site and could have purchased any number without a problem.

Your daughter has a condition which means she has continence problems, so she would be covered by the DD & E Act as far as I can see. There is no such thing as 'technically' disabled.....she either is or she isn't. From what I have read she is ......... :?

In the link I posted earlier to The Pituitary Foundation website there is a page which allows you to get a Toilet Facilities Card for the price of an S.A.E. Might be useful as well.......

http://www.pituitary.org.uk/content/view/24/
 
Yes you can have one :!: Feel like fairy god mother ding

http://radar-shop.org.uk/

Key and NKS guide
Price £ 14.99 +PP

Key only £3.50 +PP

Many disabled people have rights under the act. Continence problems are a disability, just as a major mobility problem, although you may not consider yourself “disabled”.
Click to expand...


http://www.bladderandbowelfoundatio...n-and-advice/incontinence-and-discrimination/
Bob
 
THANKYOU bowell aka fairy godmother, i have a radar key and a 'just can't wait card on its way.
never heard of those cards should save me annoucing to the whole shop 'she's incontanent do you want a puddle.lol
 
Hi all.
My son (4yrs old) suffers from d.i. I feel I could use some support.
He was diagnosed Dec 2009 & still is not very stable.
Last week our Endocrinologist increased the dose of DDAVP (0.2mg x2 )
We're waiting for MRI.


I hoped after last medication increase that my son will be ok. (less tired, will have better appetite), but it worked only for few months.
 


Hi.
Welcome to the Forum.

Diabetes Insipidus is very different to Diabetes Mellitus which is what this Forum is mainly about. I never like to point somebody away from this Forum but TBH, you may benefit from more practical advice and better support on this other website which I posted about on page 1 of this thread.

Here is a copy of that post :


Links to other places that may be of some help........

http://www.nhs.uk/conditions/Diabetes-i ... ction.aspx

http://www.diabetes.org.uk/Guide-to-dia ... insipidus/

http://www.bbc.co.uk/health/physical_he ... dus1.shtml

Hope they are of some help to you. We can offer support in other ways if required.
 
I have a radar key, just type in "Radar Key@ in a search engine and fill in your details and they will post one out to you, they are about #3.50 each. I actually ordered two, one for me and one for a friend so you don't need to have a blue badge or be disabled. Hope this helps you and your daughter
 
Clairslloyd

I have a radar key,
I actually ordered two, one for me and one for a friend o you don't need to have a blue badge or be disabled. Hope this helps you and your daughter
Click to expand...

YES YOU DO

Moraly you are meant to have a medical need ?
And giving advice out like you don't need to have a blue badge or be disabled.that does not help the people that do?





http://www.radar.org.uk/radarwebsite/tabid/41/default.aspx

Not saying you do not have a medical need for one and not aimed at anyone
However
Disabled people have so many problems accessing toilets without the non disabled adding to the our problems.

Not uncommon for mums with pushchairs blocking all access to disabled toilets
 
Sorry for being misleading - should have said that when you order you dont have to specify a disability - I am actally disabled so am entitled and so was my friends little boy. Many apologies :cry:
 
No Harm

As you can imagine one of my Pet GRUMPY points being a wheelchair user also incontinent
Buses with non working Ramps my 2nd GRUMPY one
 
I have Diabetes Insipidus and am quite surprised to find it on this forum as it is totally different from any other form of diabetes.The majority of DI sufferes have this due to a pituitary condition.Best site for sufferes is The pituitary Foundation.In my own case I developed DI after my Pituitary gland (about the size of a pea in the centre of the brain) packed in, resulting in me not producing any hormones.I am taking Desmopressin for the DI, Thyroxin, Hydrocortisone steroids, Testosterone and also a daily injection of Growth Hormone - I will need to be on all of these for the rest of my life.Diabetes Insipidus medication is most commonly tablets but can also be by nasal spray or injection
 
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