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DLA and food allergies


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#1 bid

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Posted 27 August 2008 - 02:34 PM

My two youngest both have severe, life-threatening multiple food allergies.

Years ago someone suggested to me that I should claim DLA for them, as they knew a child who got it for similar.

I never did, partly because I was so worn down with DLA renewals for my DS, partly because I couldn't face filling in those dreaded forms another two times, partly because I didn't feel it was 'fair', IYSWIM.

But now I've just spent nearly ?50 on 3 new medibags for them! crying.gif I have used ordinary bumbags and wotnot in the past, but from experince it's seems safer to have the 'proper' ones as people can see clearly what they are (there have been muddles before). TBH a fiver of that was for express delivery because I'd forgotten DD needed an adult one for secondary school rolleyes.gif shame.gif

And then when I thought about it, most of the free-from food is very expensive. I know you can get some on presription, but again I've always just bought it...because things like the soya milk is a particular brand, and mine have always had another brand and are used to it (different brands do taste very different), etc.

So there is plenty to use the money on, and they do need more care and supervision than other kids...cooking separate food, constant supervision around food. Both have needed their epipens in the past, plus hospital appointments for the specialist allergy clinic (DD had 3 separate food challenges this holiday, total cost of rail fares about ?80 just for those).

What do you think? I still feel 'funny' about the idea...partly the horror of the forms, partly I suspect because I don't want to 'acknowledge' two more of my children have significant medical needs sad.gif and partly because I think it might be unfair.

Do any of you claim DLA for something like epilepsy or diabetes for any of your NT children, which is how I would equate their medical needs in my own mind IYSWIM?

Bid unsure.gif

Edited by bid, 27 August 2008 - 02:45 PM.


#2 Flora

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Posted 27 August 2008 - 03:35 PM

bid,

I think you should definitely apply.

Getting lower rate care for your two with allergies would be perfectly reasonable and would cover some/all the costs and reflect the amount of time, planning etc that goes into catering for them. I've seen the lengths you have to go to and I think you should apply.

One of my friends has a 9yo with severe food allergies (every kind of nut, eggs and something else recently added but can't remember what) and I'm forever telling her to apply. It's different when they are babies and toddlers because everyone is going out of their way then to cook special food anyway, but yours are getting older now.

It's a medical condition and people do get DLA for severe asthma, epilepsy, diabetes etc... it shouldn't be different for the life threatening multiple food allergies your littlies have.

Flora

#3 Nic m

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Posted 27 August 2008 - 10:02 PM

Bid i think you should apply, and i also think you should ask for the food that your children will eat on prescription from the Doctor.
My sister has coeliac and she just adds particular brands to her prescription list whenever she finds something she likes.The Doctor is happy to do this and has encouraged her.
Good luck with the form filling and perhaps get the Doctor to fill in all the medical bits (it helps)
N x

Edited by Nic m, 27 August 2008 - 10:02 PM.


#4 Tally

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Posted 28 August 2008 - 09:19 PM

I think you will find that it is easier to fill in the forms in this case as their difficulties are more easily definable.

I don't think it would be unfair. I kind of feel the same about my own recent application. It feels wrong because I have always muddled through, and my motivation for applying is mostly financial, but I have additional expenses and a reduced income as a result of my condition, just like your children's allergies cause you additional expense.

#5 Flora

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Posted 28 August 2008 - 09:29 PM

That's a good point Tally.

The whole point of DLA is when for some reason the living expenses are higher and/or that person is unable to earn the same as if they didn't have the disability (or in the case of the parents they can't earn as much because of all the extra care they are providing etc. )

Flora

#6 sueeltringham

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Posted 29 August 2008 - 10:44 PM

Hi,

I'm in a similar position with a toddler and multiple food allergies (milk, egg, nuts, kiwi, pulses). It basically means we can't go anywhere without specially prepared food, epipens, medications, etc. Everything I cook is from scratch as even free from ranges seem to contain allergens we are trying to avoid. I'd never really thought about DLA for my youngest, but having read this post has made me realise it should be a valid reason to apply! Mmmmm off to get thinking cap on!

Sue

#7 lorryw

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Posted 30 August 2008 - 06:42 PM

Hi Bid,
I would definately apply. A few years ago a friend applied because her son had a peanut allergy and was awarded middle rate. I know the forms are an absolute pig but your children have a need above and beyond most NT children.
Good luck
Loraine xxx

#8 Kathryn

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Posted 30 August 2008 - 09:36 PM

Go for it! Of course they're entitled to it, given the serious consequences of not providing the care they need.

The forms are yukky but you're an old hand at it now smile.gif . Can you get some help in completing them from an organisation which specialises in their particular conditions?

K x

#9 Elouise

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Posted 31 August 2008 - 09:01 AM

Hallo Bid,

Sam grew up on an 'exclusion diet' supervised by the hospital due to the problems milk, nuts, eggs, fish and some beans were causing him.

It is worth the effort of applying for DLA for life threatening allergies (Sam carries epipens) as DLA is considered by the amount of extra care a person needs against another person of the same age who has not got such needs. Sam gets the higher rate care mostly because of his allergies.

I purchase Sam's food in bulk direct from Suma http://www.suma.coop/; they specialise in vegetarian and carry extensive vegan ranges including many soya milks and soya based milk replacement products and will deliver direct to your door. I tend to buy single item ingreadiants and the staff will help if you need a full ingraediant breakdown and explain why.
The BranTub in Malvern http://www.brantub.co.uk/index.html stocks a huge range of 'allergy foods'. If you are too far away to be able to use them then do use their website to see what specialized items are available in the UK and you could ask if they could suggest a supplier closer to your home. Again ask if anyone does 'bulk discounts'. It is often cheaper to buy a 24 tray of soya milk in bulk than to keep buying the stuff split into singles.
Another useful source is any independant local vegetarian shops, often they are willing to give bulk discounts on milk replacement products as they are used to serving vegan families.

Doing this saves me a fortune and a lot of time too!

Sam had Prosobee on prescription until he was 5 and able to eat more than plain rice, apricots, carrots and tiny pieces of organic lamb.
Cealiacs and I think those with galactosemia can get some basic foods on prescription but other allergy sufferers are not included. It might be worth chatting with a hospital dietician to check if their is anything covered by NHS prescriptions that you could ask your GP to prescribe other than the epipens, antihistimines et al.

When completing the DLA forms think about the amount of time you have to 'supervise' to keep your children safe; the care needed in food preperation, sourcing food and even the silly things like soap used for washing. I have made horrible mistakes there after being so careful with food like using Pears soap on Sam that ended with a trip to A&E, peanut oil, and another using a non bio washing powder trying to save some money that ended up in the poor boy covered head to foot in icthabands after his skin bubbled.Oops.

Hope that is of some help.




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