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Rank: Member
Groups: Member
Joined: 2/5/2008
Posts: 28
Location: England, UK
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hi my name is Hannah im 15 from the UK England i have Clasical pku im on 6 exchanges im not sure what you call them i have a older sister with classical pku as well and 2 non pku brothers anyone want any information or want to keep in contact just ask me and i will try and answer your questions plz wb Hannah x
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Rank: Advanced Member
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Joined: 1/30/2006
Posts: 540
Location: Sydney
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Hi Hannah,
Welcome to thepkutree. Great to hear from you. I am an adult with classical PKU and am on about 24 to 30 units which is about 8 to 10 grams on phe a day I think but I just do the diet automatically and knows what works for me.
I am having 1 Lophlex sachets, one purple and one white (which I drink with a flavoured straw) PKU system 20 coolers
Have fun and look forward in hearing from you soon.
Debbie
Debbie Colyer
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Rank: Member
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Joined: 2/5/2008
Posts: 28
Location: England, UK
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hi thanks for reply i dnt like coolers or lophlex i have Phelexy-10 6 sachets and 1 Phelexy-vits a day i have just made a newmeal lol it just came into my head pku rolls and pku burger mix with some tomatoe sauce make pku burgers mm they taste really nice put the burgers in the roll and add some sauce and there is you pku burgers try it closest we can get and also have you ever thought of making pasta pku crisps fry some pasta in a pan with some oil till they are crispy not to much tho mite go 2 hard den into bowl add some salt and black pepper or anything you think of to flavour and mix and eat and enjoy i went into the pku newsletter about those lol hope you like them. anything you consider i could try go ahead and write thanks han x
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Rank: Member
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Joined: 2/5/2008
Posts: 28
Location: England, UK
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hi i was at my pku conference last wkend it was gd fun we have some new products coming out like sausage mix and a new burger mix(lamb and mince flavour) little lemon cakes and chocolate crunch bar and cearal flakes and a new supplement called add ins have you heard of add ins its got no flavour you sprinkle it in your foods and you wont taste it its got the vitamins in as well cant taste a thing also they is a custard coming out and there thinking about bringing pasta crisps out that i mentioned before i gave them the idea and few more foods do u have anyhting like sausage mix its really nice and they are trying to make a cure ppl who are on mild pku will be able to get tablets from june here and will be able 2 eat anything they want even meat and ppl who are on classical pku like me have 2 wait till 2012 to be able 2 take 1 injection a month and be able to eat anything even meat egg fish etc everything hope to hear from you all sn wb plz han x
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Rank: Advanced Member
Groups: Member
Joined: 1/30/2006
Posts: 540
Location: Sydney
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Hi Han
It is always great to see the low protein products that are going to be on the market for us to have.I have had add ins when I was in the U.S. It is amazing that they don't have any taste or smell. Glad that you enjoyed the conference. Have fun!
Debx
Debbie Colyer
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Rank: Advanced Member
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Joined: 9/22/2005
Posts: 597
Location: Penrith, Sydney
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Wow Hannah, Thank you so much for sharing the information you got from the conference.
The tablets and injections sound amazing - hopefully they are not too good to be true. i guess you cant wait til 2012 to see if you're able to use this treatment option?!
I imagine there would be quite a few teens out there who struggle with taking their formula and would really love those add-ins that you mentioned. No taste and just adding to food sounds easy.
It's so great to see you being so proactive about managing your pku diet at your age and not complaining about it. You're very inspiring. I hope my daughter (only 2 years old at the moment) follows in your footsteps!!
Jolanda
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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Do you celebrate Easter Hannah?
Can you buy PKU-friendly easter eggs over there?
the person you love is 72.8% water
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Rank: Member
Groups: Member
Joined: 2/5/2008
Posts: 28
Location: England, UK
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umm yeh i celebrate easter they send us some like little easter pku chocs i dont like them but i have a normal easter egg and i weigh it on exchange
well diet isn't really dat hard and you just get used to it aww and thanks lol
yeh add ins is gd idea
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Rank: Member
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Joined: 2/5/2008
Posts: 28
Location: England, UK
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hi again i have tried all the coolers no the white 1 is new here i didnt like it but not as bad as others and i tried it with flavoured straws (caramel)was ok and have you tried phlexy 10 ??? blackecurrent and apple the drink one
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Rank: Advanced Member
Groups: Member
Joined: 5/2/2006
Posts: 38
Location: Central Coast NSW
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Hi Hannah,
I thought Id introduce myself, hope you dont mind. Im Kelly, 29 years old, Lived in Kent for 17 years, now in australia but looking to move back to the UK permanantly within the next few years. I take the PKU Coolers and Im on 10 exchanges, but I dont really count them anymore as Im an adult, I go by my blood test results these days.
It was very interesting to read the info from the PKU conference!! I used to attend the conference every year, and miss them alot!! Im planning on coming over from OZ and attending the conference next year, its great to hear of so many new developments in PKU and the foods. We are so "beind the times" here!! You have it really good over there!! What part of England are you from?
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Rank: Advanced Member
Groups: Member
Joined: 1/30/2006
Posts: 540
Location: Sydney
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Hi
I have the coolers as well the purple and the white with the straws which is good actually much better than the formula I had to take while growing up.
Has anybody been having problems with ordering the milupa milk and other items from SHS. I have been so fustrated with the lack of LP products lately that I ordered food from PKU perspectives in the U.S. I am really looking forward in getting some really nice products.
Yes Australia is so far behind some of the other countries. Crazy that our LP are not easier to buy.
Debbie Colyer
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Rank: Advanced Member
Groups: Member
Joined: 5/2/2006
Posts: 38
Location: Central Coast NSW
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Debbie Colyer wrote:Hi
I have the coolers as well the purple and the white with the straws which is good actually much better than the formula I had to take while growing up.
Has anybody been having problems with ordering the milupa milk and other items from SHS. I have been so fustrated with the lack of LP products lately that I ordered food from PKU perspectives in the U.S. I am really looking forward in getting some really nice products.
Yes Australia is so far behind some of the other countries. Crazy that our LP are not easier to buy.
Hi Deb, where do you get your foods from in the U.S? How do you go with customs on importing food? I dont know about the Milupa, I get my Duocal on script.
I think I might be abit behind here, Is that a new formala you are talking of? Ive not heard of white with straws...I must get to a social event and catch up...any more new products I have missed???
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Rank: Advanced Member
Groups: Member
Joined: 1/30/2006
Posts: 540
Location: Sydney
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Hi Kelly,
Good to hear from you again. It would be so good if you are available to be a supervisor at the camp for kids that will be held down at Narrabeen from the 29th September to the 3rd of October.
The white cooler has only just been on the market for a short time. I started taking them in Jan or Feb the months are going so fast it is really hard to catch up. The purple ones have been around for a while.
I can send you a couple of each to try if you would like.
Ordering low protein here has been really fustrating experience for me lately so every so often I get online and order food from cambrookes or PKU perpective in the U.S as they will ship to anywhere in the world. The LP are not that more expensive than here now that our dollar is doing so well against the green back and of course the shipping cost is added on. I ordered $250 or really nice and easy to prepared food and will have to pay $170 shipping cost which is a pain and financial draining but I only do this now and again. UPS usually delivers it to my door which is convenient.
I wish we had a system and the range of LP products like the U.K. The U.S have a great range of products as well but they are like us have to pay for them. In some parts of the U.S the clinics covers their costs or insurance companies.
Cheers Deb.
Debbie Colyer
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Rank: Member
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Joined: 2/5/2008
Posts: 28
Location: England, UK
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hi kelly im from the south west of england swindon wiltshire u heard of yeh i have bn 2 the last 3 now before that would of bn wen i was 5 lol so its gd 2 be goin bck 2 them i lv goin the next 1 mite be in torquay in devon i think their ns last yr it was in yorkshire.
I have tried the white coolers at the conference they are new over here and tried with a flavoured straw i dont like coolers tho.
wb han x
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Rank: Advanced Member
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Joined: 5/2/2006
Posts: 38
Location: Central Coast NSW
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Hi Hannah, I have heard of Swindon before, I have travelled around England a fair bit. Well Torquay sounds like a nice place to hold the conference, I have been there a few times and its very beautiful! I am going to get in touch with NSPKU and see how I go about booking a place for next year!!
I have just recieved a sample of the white coolers and Im trying to hunt down some flavoured straws!
How many exchanges are you on? Im on 10. Hows the weather been over there? Im not sure what to expect weather wise when I visit.
Kelly.
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Rank: Advanced Member
Groups: Member
Joined: 5/2/2006
Posts: 38
Location: Central Coast NSW
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Hi Deb
I sent you a PM about the kids camp, did you get it??
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Rank: Advanced Member
Groups: Member
Joined: 1/30/2006
Posts: 540
Location: Sydney
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Hi Kelly,
I did get your PM sorry I haven't responded as I have been so busy with lots of things. We are having a committee meeting this Saturday about the camp so if you are interested in becoming a supervisor I can let the committee know. Camp is lots of fun and it would be great to have you as one of the supervisors.
Just let me know as soon as possible. We just have to supervise the children at meal times, and with taking formula plus writing their journals and keeping track of the phe intake which isn't too hard as the kids are great usually with their diets and the usual things.
Debbie Colyer
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Rank: Member
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Joined: 2/5/2008
Posts: 28
Location: England, UK
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hey kelly
im on 6 exchanges highest ever bn on b4 dat i was on 5 1/2 only on 6 cuz mi mim ask dietician lol
and yeh torquay gd place 4 conference
bout sept time i fink we find out bout nxt conference
weather is bn ok sunny but has bn cold still and snow a few times wb sn han x
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Rank: Member
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Joined: 2/5/2008
Posts: 28
Location: England, UK
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hey every1 its been along time since i last posted a message how are you all doing well im fine and im 16 2moz :) and im goin away for 3 nites.
Have any of you got any new products 2 share with us im waiting 4 the new Pasta crisps i mentioned to loprofin they are making them in to packets like crips yay can't wait hopefully they will get them 2 Austrilia and other countries they are really nice my mum makes them every now and again for me but it will be good for packed lunches and snacks etc for any PKU.
also waitin for the new Caramel dessert(free) and custard(free)
well i will speak 2 u all soon
wb soon
luv Hann x from UK (England)
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Rank: Newbie
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Joined: 12/9/2008
Posts: 2
Location: England
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Hi my name is Pip, Im 18 and I live in cornwall, I have classical PKU. Im on 5 exchanges a day... (dont get why they are called that) I have Phlexy-10 capsuals (150 a day) I hardly know anyone with PKU other than myself and my 16 year old sister... Would be really nice to talk to someone else with it as well
Pipxx
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