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  • What is a perfect PKU App?

    Paul - - PKU Apps and Tools

    Post

    @Gosia and @Mfresh personally I don’t like apps where you can keep track of your levels and discuss the right path to follow that are created by industry. It is never 100% clear what data they collect and how they use it and to what end. Privacy and transparency should both be number 1 and guaranteed for 100%.

  • Who is attending the 2018 ESPKU Conference in the beautiful city of Venice ? See espku.org for more details!

  • Home Phe Monitor

    Paul - - Bloodlevels and blood samples

    Post

    At the moment 3 companies are working on a home monitoring kit and all are in various stages of development. Some are conceptual. It will be a few years before one will be available in my opinion.

  • ESPKU Conference 2018 Show event

  • Hi Dimitri; Your daughter needs her formula, as it gives her the nutrients she lacks because she does not get normal food. I know it can be challenging especially when she is ill. By the way are you a member of the PKU organisation in Georgia ? Cheers; Paul

  • Hi All; What kind of features would you like to see on a monitoring kit ? And what kind of questions do you have when it comes to privacy (of your data), security, involvement (and motives of ) companies ? We know a few companies are developing such a kit. I think it is useful and to all our benefit when we do not accept and use any device but stay a bit sceptical on sharp.

  • Hi Dimitri; When you are sick the phe levels are always elevated and can be very high. The only thing to do is to have her eat as much allowed foods and try if she takes her formula. Once she is well again the levels will return to normal, provided she sticks to her diet (or you help her to do so, i don't know how old your daughter is). Cheers; Paul

  • We don't have a dog

    Paul - - Everybody and his dog

    Post

    He's cute. German shepard i assume? We had one too, ages ago when i was young

  • Hi; I don't have a fixed finger but mostly middle or ring finger. Somehow never the pinky. Let me give you a tip you might not know, if you prick to the sides of the fingers it hurts less cause there are not as many nerves there. Cheers;

  • Just a little game - 6.000

    Paul - - Games

    Post

    5957

  • PKUBoard Advent Calender

    Paul - - Board-News

    Post

    @Gregor Hammerschmidt and @Alexander Hennig love todays offer.. Will check with Marieke as she can drink wine very shortly again

  • Hi @tjanasek Welcome to the PKUBoard! What you write is a familiar story, something discussed here more than once if I am correct. I am a 40 year old PKU (classical) so like all here I can relate to being fed up with the diet from time to time. I have never been off diet but I do not count or measure anymore lik most adults. Do you have any idea how high your levels were when you relaxed your diet ? I know there are some older PKUs here that have been and struggle with the diet who are older tha…

  • values too low?

    Paul - - Child PKU

    Post

    @mieze and @Meggles23, Let me add to the last post. If a PKU is malnurished the body will break down the body own proteins and this will lead to higher Phe values. I'm almost sure you are aware but just want to add it for others to read. Cheers

  • Just a little game - 6.000

    Paul - - Games

    Post

    5967

  • values too low?

    Paul - - Child PKU

    Post

    Hi @Meggles23 I think the best is to keep the levels in the middle of the bandwidth, especially with children so they can take one snack without impacting their levels negatively. As long as you have total control over what your kid eats, like babies, you can go to the upper half of the bandwidth margin. This is a generic advice however, it is worth checking with your dietitian and clinician to see how they advice in the particular case of your daughter. Every diet is tailored to specific needs …

  • values too low?

    Paul - - Child PKU

    Post

    I agree and disagree with @mieze. Yes 2.4 is not too low and 6 is way too high for an infant. Best is to keep her in the middle of bandwidth as it will give some room to manoeuvre without levels getting too high or too low. I do not agree that you should increase the intake with 30 or 40 without checking and consulting with your daughters dietitian. I suggest you increase by 10 now until you are able to consult the dietitian. It is better to increase in small steps than in big ones.

  • Just a little game - 6.000

    Paul - - Games

    Post

    5971

  • Product fail :)

    Paul - - Everybody and his dog

    Post

    Guess they wished they knew German slang #Fail

  • Just a little game - 6.000

    Paul - - Games

    Post

    5973