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Rank: Advanced Member
Groups: Member
Joined: 9/22/2005
Posts: 597
Location: Penrith, Sydney
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Just curious what people with kids with PKU are calling their supplement?
I've always referred to it as "Darcy's Milk" but now that I'm teaching her what she can and can't eat the word "milk" is probably not a good idea.
the person you love is 72.8% water
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Rank: Advanced Member
Groups: Member
Joined: 1/30/2006
Posts: 540
Location: Sydney
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Hi Yolanda,
I have always call my supplement formula from the time I was really small and even now. When I returned back on the PKU diet about 16 years ago. I sometimes would refer to my formula as my protein drink so I would fit into the workplace easier which has worked for me since people have protein drinks at the gym I thought people could relate to this better than having to go into the explanation of PKU to everybody all the time. I certainly beleive making people away of PKU and the way that we live but I like to have time to explain PKU properly to people and during a busy workday isn't the best time to go into PKU even though I have had people continuously asking. This was mostly in my old job but now everybody knows about my PKU and we have discussions about PKU, autism etc which is all good.
Debbie Colyer
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Rank: Advanced Member
Groups: Member
Joined: 9/22/2005
Posts: 597
Location: Penrith, Sydney
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Hi Debbie,
"Protein Drink" does sound good doesnt it?
That's what I'm after, a word that doesnt need explanation but is also not misleading like "Milk" is.
Thanks Deb
Jolanda
the person you love is 72.8% water
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Rank: Advanced Member
Groups: Member
Joined: 9/1/2006
Posts: 43
Location: sydney,NSW, Australia
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Hi Jolanda,
as mine always used to taste bad i would call it medicine and always had to be reminded to have it. Protein drink sounds good also as really that is what it is.
Did you get my email about the newsletter articles as i never got a reply?
Katie
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Rank: Advanced Member
Groups: Member
Joined: 9/22/2005
Posts: 597
Location: Penrith, Sydney
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I cant believe I didnt reply to your email Katie! So sorry.
Yes I did get your message and I would love to put ANYTHING you feel like writing about in the newsletter. I agree that some general diet/nutrition topics would be good too and we'll leave the PKU related ones for the PKU dietitians :)
There's a page called Your Story for people to tell their story and it would be wonderful if I could put an article about you there in the Summer issue.
the person you love is 72.8% water
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Rank: Advanced Member
Groups: Member
Joined: 9/22/2005
Posts: 597
Location: Penrith, Sydney
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I do have an empty half page in this Spring issue I'm working on at the moment if you can think of anything :)
x Jolanda
the person you love is 72.8% water
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Rank: Advanced Member
Groups: Member
Joined: 10/12/2008
Posts: 211
Location: Lithgow, NSW, Australia
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Hi Jolanda,
I just found this topic, as I tend not to go to the Baby bit too often.
The generic term that I use is supplement, as it is what is used to supplement the diet. I object to the term formular as this is something an infant has, an adult has a supplement. Protein drink is good though. Nick names for my supplement include 'Think Drink',as it aids memory, concentraion and general brain stuff, 'Pink Drink' this is descriptive, 'Pink Think Drink' when I'm showing off. Another good nick name, depending on my mood might be 'Toxic Cocktail' Maybe not too suitable for a three year old! This is all a step up on a previous supplement that became known as 'Orange Vomit' or 'That orange vomitty stuff in the jug' I pointed out to the person who named it thus, that it wasn't really very helpful. To wit the reply was 'But it is though' I couldn't argue with that, still didn't need remining though!
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Rank: Advanced Member
Groups: Member
Joined: 7/26/2006
Posts: 266
Location: Sydney
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WHen I grew up I always called it my mixture, and often still refer to it as that, especially to mum. But if I have to talk or say anything to anyone I just say protein or mineral supplement because I cant eat everything.
If a GP or doctor asks if I am on any medication I say no, but cant help mentioning my lifelong supplement or whatever it may be. I consider it a medicine because I have to have it for a medical reason. But they fobb it off as if I am not on medication.??? I do get confused, but also happy I am considered somewhat healthy.
I hate people looking at food I eat, or anyone else is eating and their response may be my "eeeeeeeewww" or "yuk". I consider this as being very rude, no matter what it may be including my supplement.
So calling it vomit is rude, and you know it is often people closest to us that do this.
Sorry but this is my pet hate!! Never turn your nose up rudely at what anyone is eating- it's bad manners.
Jaycee - I love some of your "think drink" and pink names!!
Don't Give Up!
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Rank: Advanced Member
Groups: Member
Joined: 10/12/2008
Posts: 211
Location: Lithgow, NSW, Australia
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Hi Raelene,
yes, it probably is rude. The friend who made the 'orange vomitty stuff' comment, over 10 years ago now, still shudders when she thinks of that jug sitting in the fridge! She knew I was having a hard time, the stuff used to make me heave. Probably where the name came from. It was probably also her way of coping. Yes, she's still a friend! The Phlexy-10 isn't so vile and doesn't need to be made up in advance - a lot better all round!
The problem with my 'Think Drink' can be remembering to take it! But that's another issue!
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Rank: Advanced Member
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Joined: 7/26/2006
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Location: Sydney
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Hubby often looks at my food and says yuk! or sometimes "that looks good".
I have never tried phlex-10. I did try lophlex and kept throwing it up. I dont know what the problem was, it isn't as though their is much to have at once. I take my stuff 1st thing in the morning and before tea at night
Don't Give Up!
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Rank: Advanced Member
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Joined: 8/13/2006
Posts: 266
Location: SA
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charlotte knows her's as MAX , i sometimes say to her that shes having a hot dog in a drink and thats when she gets her muscles from and we have a giggle , by the sound of it making it fun isnt to bad lol
DIET FOR LIFE = SUPPORT FOR LIFE (c)
Life doesn't seem as bad when you look in to their beautiful eyes and they smile back with LOVE
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Rank: Advanced Member
Groups: Member
Joined: 3/28/2007
Posts: 185
Location: Fernvale Queensland
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we call it max
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Rank: Advanced Member
Groups: Member
Joined: 10/12/2008
Posts: 211
Location: Lithgow, NSW, Australia
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As a child I used to have a vile brew called PK Aid. It was a fine white, evil smelling powder that wasn't really water soluble. Clumps of evilness floated on the top of anything you tried to mix it with. Thank goodness it's gone the way of the Dodo! Mine was mixed up with cream and water, flavoured with strawberry quick. It was referred to as my 'milk drink' This never caused me any confussion. I only took it at night, so explaining it to people wasn't a problem. Later on I mixed it with raspberry cordial, had to be Cottees and certainly not cheaper stuff. I probably still called it 'milk drink' even though it resembled neither milk or something you'd want to drink!
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Rank: Advanced Member
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Joined: 7/26/2006
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Location: Sydney
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I also had PK Aid and Aminogram. I also had to have cottees cordial Rasberry, and at one stage made a paste by mixing it with honey!
I cant stand rasberry cordial now!! Cannot even contemplate drinking it....
Don't Give Up!
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Rank: Advanced Member
Groups: Member
Joined: 10/12/2008
Posts: 211
Location: Lithgow, NSW, Australia
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Yes, I'm afraid raspberry cordial has kind of run it's dash with me too!
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Rank: Newbie
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Joined: 8/2/2007
Posts: 6
Location: Newcastle
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I had aminogram too, I used to have it with green cordial in a paste, yuK! Then it was maximum with orange cordial and I can't drink either now. So funny to hear the same story from others.
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Rank: Advanced Member
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Joined: 8/15/2006
Posts: 195
Location: Bendigo
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My "special milk" as a kid was always mixed with strawberry or banana nesquick.... YUCK. I can't stand the smell of that stuff now.
Jodie
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Rank: Member
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Joined: 2/17/2009
Posts: 24
Location: Melbourne
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Such an interesting thread! :)
I was on Aminogran until I was 13, and it was a daily fight to get it down me. It used to make me throw up and I'd constantly feel sick and bloated from it and I'd only just start feeling better when it was time to take it again! It used to get mixed up in a foul tasting and smelling paste (I always refused to make it), and I had to wash it down with lemonade and clamp a tissue and hand over my mouth to stop it coming back out.
My parents used to call that my Minos, or simply my drink.
After that I was on Maxamum for a while and now generally speaking I hate orange flavours! Now I take lophlex LQ orange flavour which I don't mind, though it took me a long time to get used to it. I drink it down in two gulps and just refer to it as my formula. If anyone asks what it is I too say it's a protein drink! :)
Kate Buckland
26 CPKU - preconception diet
Melbourne
Check out my PKU Blog by clicking here!
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