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#1 Fri 18 Jan 08 1:35am

ddentelbeck

Member
Member since Tue 15 Jan 08

PKU

Has anyone ever heard of this disease?  My grand daughter was born with it.  She cannot have protein because her body cannnot break it down.  If she has too much protoein in her system it will cause severe brain damage and mental retardation.
I tried to email Jamie about it because he does so many things with veggies.  She will a pure vegan, no meat, fish, folw, beans, nuts or soya/tofu.
If any of you can help me with this and some recipies it would be fantastic!!!
Oh by the way hello to all of you, I am from London, Ontario Canada

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#2 Sun 10 Feb 08 10:46am

Another Big Al

Member
Member since Sun 10 Feb 08

Re: PKU

Hi, my son has the same: the sites that we use are:

www.lowproteinliving.co.uk
www.shs-nutrition.com
www.nspku.org

The lowproteinliving site has lots of recipes with pictures, but you have to register.

Hope this helps.

big_smile

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#3 Sun 10 Feb 08 1:11pm

Tanya

Forum champ
From Scotland
Member since Thu 15 Jul 04

Re: PKU

Hi ddentelbeck -

One of our posters, The White Rabbit, answered the question you posted on 1 February on the Recipe Swap Thread.  You will find it on the link below.

http://www.jamieoliver.com/forum/viewtopic.php?id=29213

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#4 Fri 12 Feb 10 9:31pm

vdossou

Member
Member since Fri 12 Feb 10

Re: PKU

Hi ddentelbeck,

My name is Vida, I am 29 years old and have classic PKU. I am also a Dietitian working in Liverpool. I have recently got married and am starting to plan a family which means I have to really tighten my PKU control now! I am on 6g protein a day alongside my protein substitiute so am having to be very inventive with low protein cooking and use of products!

I have found all the websites mentioned particularly useful and also the book by Eileen Green called 'special recipies'. I dont know what you have available to you in the way of low protein prescribable products but i rely very heavily on these now my protein is so restricted. I also am very lucky that my mum was such an amazing and creative cook when i was younger that she could pretty much whizz up a PKU version of anything...I am not quite as good as her so she is helping me out at the moment! Please feel free to reply if you have any queries re this or living with pku.

Good luck and happy cooking!!!  big_smile

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#5 Sat 13 Feb 10 2:06am

JoyYamDaisy

Forum super champ
From Melbourne Australia
Member since Sun 12 Apr 09

Re: PKU

Vdossou, Welcome!
I know how restrictive the PKU diet is. Congratulations to you and your mum for finding such good ways to eat for it.
It is good to have you here! smile

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#6 Tue 03 Aug 10 7:59pm

cook4love

Member
Member since Wed 14 Oct 09

Re: PKU

Cook for Love is a culinary website devoted to low protein cooking.  There are lots of recipes for the whole family to enjoy.  There are no fees, you just need to register to access the recipes.
www.cookforlove.org

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#7 Tue 31 Jul 12 12:55pm

samluke1

Member
Member since Tue 31 Jul 12

Re: PKU

i have a son age 3 and he will not drink his formula for pku. he is on anamix jr at the moment and we have tried powders flavored formulas. is there anyway of mixing these formulas in to his foods or drinks we need a way of disguising them as he hates them. we have tried a closed bottle with a straw so he cant smell how horrible they smell but he still hates the taste. he has to have this formula 3 times a day and we cant get him to even have 2 sips. its scaring me and doctors dieticians don't seem to be any help. his bloods are really high so have to keep protein to a trace. because hes not having the vitamins his body isn't breaking it down.
his recommended dose is 3g per day at the moment but with bloods high its less. any recipes or ways to get him to have these vitamins/formula please help
sam help

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#8 Tue 31 Jul 12 1:17pm

mummza

Forum super champ
Occupation avoiding housework
From The land of song.
Member since Tue 04 Oct 05

Re: PKU

Welcome to the forum samluke1  smile

Oh dear , poor you ,that must make you very anxious .
I have no idea really of what the formulary you are talking about looks like , smells like or tastes like or how it has to be made up in order to be consumed .

I am not someone who advocates a star chart or some other reward system for eating food but this is not food , it's a medical treatment .
Have you tried a star chart .. A chart where ever time he takes the formular he gets a star to stick on a chart ( in a row) and after a number of starts he gets a small reward .
Or even having a look through something like the Argos catalog and choosing some small toy to have as a treat then giving him 5p or something to put in a clear jar every time he takes the formular to save up for the toy he's seen .  It takes a while to save up so don't set the goals too high but it's an achievement when it happens.

Also have you had a chat with your doctors practice nurse ? They often have great ideas .

Do adults still need to take the powder of do they take tablets ?

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#9 Mon 06 Aug 12 8:56pm

samluke1

Member
Member since Tue 31 Jul 12

Re: PKU

thank you for your comment thats ace. guna look in to making a chart but its hard when so many people are involved as me and his mum have split up etc but i think its a great idea. we have seen an improvement off telling him with his mum there if he does not have them he will be ill and need to go to the doctors more and get more needles, i know it seems harsh telling a 3 year old that and i felt bad but it is reality sad
hes not my friend at the moment  but his mum and grandma have told him to and he is back to drinking them now 3 a day, you can tell he still hates it his grandma sez but what can you do sad
so will have to see how it goes  when i have him this week. thank you again i will be off sticker hunting heh.
but iv found most dr and nurses have never come across it to give ideas with how rare it is here so internet seems the best way of getting any useful ideas
smile
the formula dose change to other forms as they get older as iv found through reaserch so one day at a time at the moment hope he keeps it up
thanx again

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