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  • Never heard of this Phe Bloc - it is not compareable to Kuvan or BH4, is it? And does anyone know whether the high phe level can also damage other parts of the body? (Since I thought it's not only dangerous for the brain but also for the nerves and on capacity of reaction - or is it both only controled by the brain?!) Thanks for explaining a little bit more

  • My Brother

    KateGilmore - - Everybody and his dog

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    Hihi... do you have your room close to hers? Hope you can sleep through though!!! Gina is the cutie on the photo with Brennan, right?

  • My Brother

    KateGilmore - - Everybody and his dog

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    Thank you How cute... Do you enjoy having him around? I bet its also a bit difficult with a small baby at home Or does he sleep through the night? My friends daughter gets her teeth at the moment and the nights are pretty short for her

  • My Brother

    KateGilmore - - Everybody and his dog

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    Can we get more photos?

  • Bienvenido Juan! Tu tienes pku o tu nino? Normalemente se dice que los parametros de ninos no deben aumentarse sobre 6 mg / dl. Para los parametros de los adultos hay recomendaciónes diferentes (todo país hay un recomendación diferente). Pero en Angleterra y los Estados Unidos hay los recomendaciónes los más strictos... Dicen que los parametros tienen que ser bajo de 10 mg / dl. Personalmente, yo creo que tenemos que hacer la dieta lo mejor posible aunque no sabemos que podría passer si tienen u…

  • Hi Truxx, I hope you find a solution soon... if you get tested and it's not PKU, have a try and get a test for several foods - you could also be allergic to something. My friend has a lot of allergics to different foods and she told me that this shows different for every patient... in her case she gets a rash on her skin and it gets very dry.. Maybe it could be also something like that. Wish you all the best, keep us updated and have a good celebration tonight, happy new year

  • My Brother

    KateGilmore - - Everybody and his dog

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    Congratulations... he is so cute... the best wishes for you and your family.

  • Hello Brenda, thank you very much for informing us about this update of the homepage... I will have a look at it since I'm not sure what to cook for Christmas yet. Have a merry christmas, too, Bye, Kathrin

  • Thank you Gosia

  • Hello truxx, welcome to the board, first of all... I definetely would see a doctor - all of this problems have to be examined...! I think this might be an option, although the cases of untreated (and undiscovered) PKU are very rare since the blood check is made for every baby... but I also heard of a case where the blood cards were mixed up and so a girl with PKU got the information everything is ok and another baby without PKU got the wrong diagnose.... I as PKU patient can see different sympto…

  • Hi Brenda, you're welcome I don't know exactly what kind of ingredient it was - I just wondered... But I will note this down. In case that I have problems with the measurements, can I send you an email? I think I will go shopping next week and buy the ingredients for some recipes and try them - I will post my feedback to every tried recipe! If you are looking for recipes from other countries, I have some German, Italian, Indian and Thai recipes which I could provide!!! If you need them I would b…

  • First of all, welcome to the board, Brenda I just registered at the page and now I'm looking at the recipes... great!! They all sound very good and I will try out recipes soon. I like very much the layout of the page, it's so professional-looking - the pictures really brings up a lot of appetite ! How many recipes have you already brought onto the site? I would also appreciate if there would be the amount of calories for each recipe, because especially the PKUs have to take care of their daily c…

  • Pku and Coffee

    KateGilmore - - Teenagers and adults PKU

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    thanks

  • PKU Board the new one

    KateGilmore - - Board-News

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    yes I sometimes have this problem too when I try to open a post.

  • Pku and Coffee

    KateGilmore - - Teenagers and adults PKU

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    HI Annaliese, sorry, but what is NDC? Instant coffee?

  • New PKU treatments

    KateGilmore - - General topics about PKU

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    yes lets hope and one day.... there might be great hapiness

  • yes I think thats always the best - realize the news - but stay in reality I think it might be still 20 years left, till there is a method to "heal" PKU for everyone. So I notice the news, but I stay on diet as usual... Unfortunately in the medical world developement lasts years... So we just have to keep going!!!

  • My boyfriend and I often eat different meals... it 's no problem for neither of us.... sometimes we eat the same meal (when it comes to vegetarian meals or something with noodles). It' sgood that your boyfriend is so supportive... I would suggest to spend a lot of time in shops to check food - from time to time you discover new things and this motivates to maintain the diet. I also like to refer to exotic food - there are a lot of nice ways to prepare a good meal... thai food, indian food, turki…

  • No, I have no experience of this kind. But anyway, my opinion of these "ready to drink" formuals are not very good... It's very handy if you are at work or "on the road" but I find this strong taste disturbing and I think, compared to the lighter taste of the formulas which still has to be prepared, the ready to drink formula cannot be that good for daily use... There must be a lot of antidegradant in it...

  • Maybe they can write an article about you and the way you get along with PKU and you could also promote your album! This possibility would also exist for the German PKU magazine... If you are interested, I could write an article about you, PKU and your music. But of course, when appearing in a PKU magazine, the article has to be mainly about you and your life with PKU The next magazine will be published in March. Write me a message, if you are interested!