My experience (what we need at the first months)

My experience (what we need at the first months)

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My experience (what we need at the first months)

May 5, 2012 in Uncategorized

So, let me write about my experience in special devices. So, when genetic service told us that we have PKU, we immediately have bought: 1) precision balance 2) a lot of phials 3) breast pump 4) a lot of cups (for mixing formula and putting in frige) 5) heater for phials 6) sterilizer Now i m asking at russian forums - what next we will need, they are keeping silence. I guess that it will be neccesary (i do not know exact word) - bread bakery, big frige (cause we have cold winter and there no good fruits and vegetables), steam cooker... What else? Could You please give me Your reccomendations? Thank You in advance

4 Reviews of My experience (what we need at the first months)

  1. Registered: Dec 6, 2009

    Posts: 0

    Thessaloniki, INTERNATIONAL

    I think that apart from the scale and the bread machine and a lot of plastix boxes you will need exactly what other mothers would need….

  2. Registered: Apr 25, 2012

    Posts: 0

    Moscow, INTERNATIONAL

    Elena said on May 6, 2012

    Nothing special? thank You!

  3. Registered: Oct 31, 2006

    Posts: 0

    Taylor, Michigan

    i have been on the diet all my life and i think the easy way is to play around with diffrent things try diffrent recipies or even just test some of the things that you like becaus ei dont always eat pku food and now i am trying kuvan now myself . some times it is hard to deal with but the result will get better

  4. Registered: Jul 31, 2011

    Posts: 0

    Melbourne, INTERNATIONAL

    Hello there ElenaMoscow,

    It sound like you got the old technologies of pku still been in use where you are. Where I am the treatment is as follows has been modernized from the old treatment where you have to got measure amount of powders, and formulas and all that stuff been used for that one person.

    Now these days I have my pku treatment in 3 cooler packs, all measured carefully from my pku clinic doctor. I have drink 3x these supplements everyday. Not the nicest tasting thing, but it sure takes out the headache having measure all those powder and supplements and stuff!!!! I am in down under, where it is getting cold, as pku technologies down would be useful for the countries that still relies on the old way…

    .I hope it will become more widespread globally as this cooler pack supplements for pku suffers as along with treatment still need the blood test. But this newer treatment will take away the guess work whist trying feed a pku suffer in the family the right amount of pku supplement!!!!!

    I eat mainly Asian food as I am pku Asian and it is rare there!

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