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  • I know what you mean exactly as I had maxamum xp for years which always worked well for me then I was supervising at a PKU camp and some of the kids and other supervisors drank phenex 2 so I thought that I would change to phenex 2 which was horrible on the tin there wasn't any instruction on powder/water ratio. On my sister's birthday I had to drink this formula quickly as I was running late for her birthday party at her friend's house. I felt really dizzy all of a sudden and went white then I j…

  • PKU and Work..

    debbie colyer - - Teenagers and adults PKU

    Post

    I agree Maria with what you are saying the problem is that we have to wait hours to be seen so I have to ask for the day off which is always difficult with my workplace as days off are very difficult to get.

  • Alcohol and pku

    debbie colyer - - Teenagers and adults PKU

    Post

    how interesting Brea thanks so much for this information really appreciate it!

  • PKU and Work..

    debbie colyer - - Teenagers and adults PKU

    Post

    I have mentioned my PKU to my employers over the years mainly because the time off I need for my medical appointment at the metabolic clinic. Sometimes I feel that I am treated differently and have been on previous jobs which has caused me to resigned. I really need to create my own business as I am happier this way working my own hours instead of always punching a time clock!

  • I have tested this out and I find this application is really good. I really like the colour coded system works well for me so I can have tighter control of my diet

  • The Family will be travelling for 4 weeks to Portugal, Italy and France! Any information would be greatly appreciated! Thanks

  • Thank so much GreXXL really appreciate your feedback. My Phe levels are ok at 500 though to 700 sometime higher just depending on my busy life schedule. I play competition softball each Saturday and trained hard on Tuesday night also my job is really active and hectic so sometimes I guess I don't eat enough for my activity level other times I eat too much. Right now I am trying to balance everything out so I can be my best. I have the vitaflo coolers 20 and take three of them a day! Sometimes I …

  • Thanks GreXXL I agree with you. I am the public officer of the PKU Association of NSW Inc which is based in Sydney, NSW Australia and also the teen/adult co-ordinator as well. A couple of PKU Adults and I am planning a general discussion for the adults with the medical professionals for the 8th October. We are only at the beginning stages of planning this event which will be good. The problem is that our clinic can't advise us on how much Phe that I should be taking a day as they are new to PKU.…

  • I have been contacted by a mother of a PKU child who is travelling to Europe soon and was wondering if anybody could let her know of any low protein companies that she could purchase some Low Protein products from. What advice would any of you be able to give her about travelling from Australia to Europe? Really appreciate any feedback that you all can give

  • Thanks GreXXL and Raelene for your comments about PKU clinic. It seems like the adults are educating the staff at these PKU clinic! Money is always so limited to be able to improve these clinics. I agree Raelene the doctor is young and is eager to help and learn which is always a great start. I saw the young doctor at my last appointment but like you I like to speak to other PKU adults at the clinic. Just as well Jill and I go to clinic on the same day! Justing sitting in the outpatient setting …

  • How many of you out there attend a PKU/metabolic clinic? Do you find them helpful at all? We have a new PKU/metabolic adult's clinic here in Sydney Australia and I really don't get much out of the appointments. The staff are nice and helpful but they don't seem to have much understanding of PKU. First I had to prove that I had classical PKU which was lucky for me that I had my mutations documents with me to prove it. I felt like I was back in the 60's again.

  • I can relate to all of the symptoms that you experience off diet as I had them as well when I was totally off diet for 18 years as I probably mentioned in the post above. I also ended up with major health concerns as an result of being off diet which were extreme cases. The problem to fit in society food is a big part of fitting in and of course I do my best to eat the same as my friends but sometimes it is difficult and can't be done. It doesn't bother me if I don't fit to what my friends are e…

  • Hi I really do beleive that you should tell your daughter as soon as possible. I was diagnosed with PKU at 2 years and 4 months in Sydney Australia and am doing really well due to the education I got from my parents through my life, even the limited information that was available during the 60's help me to understand the PKU diet from an really early age. There are some wonderful children"s book on Virginia Schuett website pkunews.org to help with the education of the PKU diet. there is also a c…

  • The metabolic clinic here is ok with adult's keeping their blood test under 900 micromoles.

  • Finding the right balance is the key it is so hard sometimes. At the moment I have a virus with conjunctivitis, heavy sinus, sore throat when I swollow difficulty in swallowing because of the sore throat, throwing up mucus I guess is a good thing. I have also being having some higher phe food and I know when I was off diet I had most of these symptoms regularly. I have just started a new job at a child care centre and realize that the virus probably came from there so fustrating working when sic…

  • Hi Kayleigh and Riley, I am 51 and have classical PKU. I was diagnosed in 1961 Sydney Australia at the age of 2 years and 4 months. Back in those days there was little knowledge known in the world about PKU. The thinking back then was There is a lot of old information out there such as parents were concern about having another child with PKU mainly because that the treatment back in the 60's for PKU was still new to lots of countries around the world. Today with the sophisticated screening for P…

  • Hi Jack, My name is Debbie I was late diagnosed with PKU in 1961 at 2 years and 4 months and have done really well thanks to my mother's strength, determination but most of all her love for me to make sure that I have the best life possible. In 1961 there was no to very little knowledge known about PKU in those days so my mother had to communicate with medical professionals in other countries than Australia to get information which took forever as in those days there wasn't e-mail. Living with P…

  • I am really happy for you Kelli and it is great that Charles is going with you!

  • I have the miluppa powder and have add water to it. It is really nice and has no aftertaste. I think it depends on the pro zero from country to country how much after taste there is. Pro Zero is great with cooking though.

  • Hi Everybody, In Australia PKU Awareness Day is held on the 1st of May each year. I know in the U.S May is PKU Awareness Month but I am not too sure if any of the European Countries or the UK celebrate PKU Awareness Day. I thought that we all could choose a colour to represent PKU. I was thinking about blue. What do you think? Breast cancer has pink, epilepsy has purple, sids has red, cancer has yellow. I am curious for any response.