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Allergies and intolerances

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Original poster

Do you/your child get food on prescrition?

26 replies

Heartmum2Jamie · 20/04/2006 15:48

My ds is allergic to milk, eggs nuts and wheat. He also doesn't tolerate alot of soya. I was originally told by the consultant that we would be able to get basic foods on prescription, like bread, bread mixes, pasta, flour etc.

Since then, our gp & dietician have said that he can only get food on prescription if he is a diagnosed coeliac...which he isn't (thankfully :) )

So who is right?? We don't have alot of money and buying special bread, rice milk and biscuits (!) is expensive. I actually asked for my family to buy him biscuits from the trufree range for easter Blush

OP posts:
Blossomhill · 20/04/2006 15:49

Do you dla for your child?

Rhubarb · 20/04/2006 15:51

I used to get those build-up drinks on prescription when I was a teenager because I was too skinny (they said!). Should've just told my mum how to cook!

Original poster
Heartmum2Jamie · 20/04/2006 16:07

BH, No, we don't get DLA for him, even with a medical file a couple of inches thick! His heart condition is stable (we think, check up in 7 weeks), he's on no meds right now (although will start allergy meds after his 2nd birthday), his eczema is moderate but doesn't wake him at night. He had just be provisionally diagnosed with laryngomalacia which give him very noisy breathing and sleep apnea, but are waiting to see an ENT for a definate dignosis.

It's all quite frustrating really, as all these things add up to quite a bit of care, but he isn't really "sick", iykwim?

OP posts:
rummum · 20/04/2006 16:10

how old is your son... my son got wysoy milk on prescription till he was 2 as he had a dairy allergy.. he's also allergic to eggs and nuts but not wheat.. thank the lord...

foxinsocks · 20/04/2006 16:12

we used to get nutramigen on prescription until dd was 2 (when she was allergic to milk,egg and soya). Once she outgrew the milk allergy, we stopped getting the special milk.

I would have thought the wheat allergy (has it been tested?) was enough to get special wheat? We have a friend who gets special bread and pasta (but not the milk) on prescription (he has similar allergies to your son) but the mum did tell me that the GPs were reluctant to write the precription and I think she ended up getting a letter from the consultant.

Original poster
Heartmum2Jamie · 20/04/2006 16:45

Rummum, ds will be 22 months on Saturday. I guess the milk thing doesn't bother me too much as he is still breatfed, he only has the rice milk on his porridge. The wheat allergy is what is making things difficult (it has been tested foxinsocks, RAST came back positive last month)). We had already been avoiding milk and egg, which wasn't too hard. I guess I can speak to his consultant again when we see him in July. I can just imagine how expensive this could get as we are avoiding for 2 years before his 1st challenge.

OP posts:
rummum · 20/04/2006 16:52

I've no idea if I am talking out of my arse here but couldn't you make your own bread?? is it just a case of using glutten free flour or is there more to it than that? is the glutten free flour more expensive??

how are you finding feeding him on his restricted diet...

foxinsocks · 20/04/2006 16:53

I would phone the consultant's secretary and ask them to get a letter done - they are normally quite helpful.

Mercy · 20/04/2006 17:00

I could be totally wrong but I'm sure someone told me that you can get wheat-free products (and other free- from products) in Sainsburys at a reduced rate.

Original poster
Heartmum2Jamie · 20/04/2006 17:03

Rummum, we have recently invested in a breadmaker, but every attempt at making wheat/gluten free bread as resulted in a disaster, lol! We are thinking of trying a bread mix to get an idea of what's in it and quantities and then seeing if we can replicate! We would prefer to make homemade bread as I have heard it tasates better, but doesn't keep fresh for long.

As for how he is on his new fangled diet........ he's doing great!! It was mainly the wheat that was causing problems. He no longer does 6, horrible, stinky, mucousy stools a day, he no longer wakes from his nap after an hour, crying and shaking. He naps for 2 hours at a time now!. He sleeps through the night, is finally gaining weight and is much happier!! It is not having any effect on his eczema, but I never thought that it was food related anyway. I still can't believe that we were told that it was only a mild positive to wheat......it has made such a difference.

Fox, I think I will call the secretary tomorrow and see what she says. Maybe I can even get a bread recipe out of her!

OP posts:
rummum · 20/04/2006 17:14

my son had really bad excema as a baby, in fact when people looked in his pram they wouldn't say ahhh... they said have you put any cream on his face it looks really sore..
anyway.. what I'm getting round to saying is that his excema didn't go away over night... it did take a while after he went dairy/egg free

rummum · 20/04/2006 17:15

have you tried a plea for help on MN for the recipe? I'm sure someone could help...

Laura032004 · 20/04/2006 17:30

I make gluten and dairy free bread using the recipe on the back of the Doves Farm gluten free bread flour packet. I cook it as a normal loaf in the bread machine. It always comes out quite well. I do use normal yeast though. It also works better with goats milk or lactose free cows milk than with rice milk.

It does taste a lot better than the shop stuff, and freezes really well. Our local health food shop sells gluten free bread, but it's £5 per loaf (although probably the same price as a shop bought loaf weight wise if it is the size of a normal loaf of bread)

PeachyClair · 20/04/2006 17:44

DS3 is 3 in July and still gets his enfamil free, they've written a prescription to last until December when I suspect it will run out.

lou33 · 20/04/2006 17:46

ds2 used to be allergic to dairy wheat and soya

we got a lot of food on prescription for him, corn pasta, breads, neocate,etc

Laura032004 · 20/04/2006 17:48

BTW, to answer the original question, DS is intolerant to things, rather than truely allergic, so nothing on prescription :(

catesmum · 20/04/2006 18:17

My dd is still awaiting a "proper" diagnosis and is still going through tests...the only definite thing is that she has an egg allergy, so we get egg replacement on prescription. But, because the consultant has said that she has "enteropathy" (disease of the gut) and is probably some form of inflammatory disease we get EVERYTHING on presciption. The dietician wrote to our GP saying that dd was wheat, egg, soya and dairy free and that was all it took. I've just picked up a prescription today for plain four, bread flour, 4 loaves of bread, 2 pkts of biscuits, 3 tins formula, pasta, crackers and crispbreads....and that's just for the next 3 weeks.....speak to your hospital and persevere, it's just your GP being tight...they don't need to be diagnosed with CD to get it (our dd had a negative CD result)

alison222 · 20/04/2006 18:36

when ds was diagnosed with food allergies he was also taken off all gluten and dairy as it ws thought that they were worsening the excema too.The idatician gave me samples and told me the only suitable bread etc for him
the paed wrote to the doctor and once the GP had that letter I got gluten free pasta, bread and biscuits. He was never diagnosed with an allergy to it as such and certainly never diagnosed as coeliac and now eats dairy and gluten although the other allergies remain.
The Pead had recommended the idet so in the opinion of hospital and GP this was sufficient to get free prescriptions. I am in west London btw

desperateSCOUSEwife · 20/04/2006 18:40

my ds2 is fed by tube
we get his milk on prescription

Original poster
Heartmum2Jamie · 20/04/2006 19:19

Thank you all so much for your input. Catesmum, what you say is very interesting, although I am sorry that you & your dd are going through all of this.

Laura: I will try looking at the recipe on the bake of the Dove flour. Can't use milk though, not even the lactose free one. I guess I will try with rice milk.

OP posts:
Laura032004 · 21/04/2006 09:37

I've made it fairly successfully with rice milk, so I hope that works out OK for you :)

threebob · 21/04/2006 09:50

You don't get anything on prescription here in NZ unless you are diagnosed coeliac. Adults have to have a gastroscopy as proof - but I think that infants have to have the coeliac gene and elevated markers. Babies under 2 can have special milk on prescription, but it just brings it down to the normal price of formula.

My basic tip is that the replicated products are massively expensive (esp. if you are not getting DLA) so don't try to replicate, your ds does not need a bread, honest. Use things like rice crackers which are a normal price, raisins, dried apricots etc.

Then have a 1950s meat and 3 veg style diet for lunch and tea - no replacement ingredients unless you want a gravy and orgran do a good one that goes a long way.

Using egg replacer is cheaper than using eggs.

Make shortbread with cornflour, dairy free marg and icing sugar as biscuits.

Once you stop trying to make his food look like yours and use the great variety of fruit, veg, grains and meat and fish that he can eat it gets cheaper and healthier.

Original poster
Heartmum2Jamie · 21/04/2006 18:29

Threebob, It may be very tue that my ds doesn't NEED bread (for example), but at the end of the day, he's almost 2, he see's what his brother is eating and whats to have the same. Why should I deny him?? He is already different enough without having to make him appear even more different. If his allergies, heaven forbid, continue into his school years, I wouldn't want him to be the odd one out, and it's not like he would be able to have school dinners unles they could guarentee it allergy free.

OP posts:
Chandra · 21/04/2006 20:26

Heartmum, we are doing as three bob, DS has been in a restricted diet since september and he understands so well what he can not have that he refuses it if some one else offers it.

Unfortunately... replication doesn't really work, we tried to replicate the food that was being served at DS nursery for a couple of months, the food we sent was, most of time, only simmilar in appearance and... he hated it most of the times, especially the wheat free bread, soooo much that he would rather starve himself than eat it. At the end we decided to cook the same for all the family to force us to cook a good tasting and nutritious diet for DS, as the "watered down" versions of our food as well as the subsititutions were some times nearly to inedible. AS a result we all eat better, and DS is very proud of his lunchbox, he loves the ceremony of opening it and take out his "treasures".

I don't think he feels that different from other children though, some children don't have carrots because they hate them, DS can't have xyz because they are not good for him. :)

threebob · 22/04/2006 19:40

I've just made an okay wheat free, dairy free, egg free buckwheat waffle. It would have made a nice pancake too - would you like me to put the recipe on. It was dead cheap - a packet of buckwheat cost me around $3 (a pound).

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