Avatar of Nickelle


March 9, 2013 in Uncategorized

   Now I need to see if I can start a petition to get ALL insurances to cover food for PKU in Washington.  If they can cover our formula they should be covering our food as well. Maybe not the things like cheeses or the wise onion ring snacks we can get in the stores but things like egg replacer and baking mix, things we make bread from and the pastas, the things that are staples for people that do not have PKU.   I also have heard that here in the USA they are working to assemble a level reader much like diabetics blood glucose readers. We would be able to prick our fingers bleed on a strip and put it into the machine getting a level within minutes.  As it is now I take my blood and no matter if I take it my self and send it in to be read or I do it at the hosp lab to be sent in, I do not recieve my level for a week.   I think we need a way that when we recieve the level it is pertainent to the moment, similar to a diabetic.   We would be able to decide if taking our blood before a meal with instant results, we would be able to decide what food would be a BEST choice keeping for the time period and in doing so be able to control and treat the PKU almost moment by moment,   We all need to push harder and put more pressure on the corperations making them and let them see the passion to have these on hand.  I have heard it is the prototype stage MEANING  WE need to push them for testing the machines. Whether they are hand held or just a machine we can have at our houses to test before we go out... WE need to push this!!!   Please,Tell me what you think about having a way to test your levels yourself! Would you want to? would you use it every time you eat or daily or weekly?   Are these a good idea for your control?


  1. Registered: Dec 6, 2009

    Posts: 0

    Thessaloniki, INTERNATIONAL

    I have read a paper published concluding that the levels between PKU people that had the usual testing and those that had a home device were not the same. People with the regular tests had better control. Maybe a low level in irregular timepoints gives you a false assurance and you increase the intake , I don t know. What I mean is that of course a home device machine would be very convenient, however more trials should be done about how to use it….

  2. Registered: Dec 29, 2011

    Posts: 0

    Anacortes, Washington

    There is no doubt that all users would need to be educated in the way diet levels work. I kind of took it for granted that if you are PKU that you would pour yourself into learning how your levels rise and fall instinctly. I have been raised in the medical feild and sometimes I speak as though all things unsaid are expected. But yes your right the education would be needed.

  3. Registered: Oct 12, 2010

    Posts: 0

    belfast, INTERNATIONAL

    hi, i love the idea of the home test kit similar to diabetes .it would be of enormus benefit to be able to maintain your own health. i rely on the labs as well.sometimes my level is high when i treat myself but it would b great to monitor it after to return it to normal.i just guess by keeping my exchanges low for a few days afterwards. i think your idea is great. good luck to you in washington.(northern ireland)

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