Community Discussion Forum New to Highly variable phe levels

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    Avatar of Ben

    I am also new to PKU. My granddaughter, who is now one year old, has been diagnosed with PKU. She is tested regularly and her levels have been low – usually below 6, I believe. She has not been on any special diet, due to her low levels of phe. Recently, her level spiked to around 20. She was retested and the level was back down, so the Dr’s attributed the spike to a test error. At her next test, the levels were back around 20 again, so she has been put on a low protein diet. Her Dr’s say they have not seen such drastic spikes in other patients, but I wonder if they treat enough to have broad experience.
    Has anyone else experienced these drastic spikes? How much variability is “normal”?
    Thanks for your help.
    Worried Pop-Pop

    Avatar of

    how long inbetween levels are they testing? because unfortatntly i have seen spikes like this in myself . especially as a child. but that there were weeks inbetween levels. if there tesing every few days then i have never heard of that. i think the doctor probly does know because pku is becoming more commen, unless hes not a PKU doctor. but then on the other had i was a rare casue and broke alot of what my doctors knew. my mom said i was like a guniea pig for most of my childhood, though i find now that it was worth it cause i know my body and so does my medical team.
    sorry i couldnt be more help, i hope all works out. if u have any questions im sure me, or Bre ( shes pretty populare on here) would love to help!!

    ~Amanda Cosburn~
    21CPKU Victoria BC, Canada!

    Avatar of Breanna

    Lol, thanks Amanda . Unfortentually, I’m not sure if I can offer much help. When I was born my level was in the 20’s, so I was put on the diet right away. Since she is getting older is she eatting more? I’m just asking because maybe if she is going from eating a limited amount of baby food to a lot of ‘big kid’ foods (like bread, pasta etc) that has a lot of phe in it.
    Maybe she does have a limit to how much phe she is allowed to have. If her phe allowance is high enough then of course the diet isn’t needed, but I guess it would be needed if she is starting to eat more high phe foods. Does she eat things like meat or dairy products? I know those are crazy high in protein! nGood luck with your granddaughter! Ask any questions you have, there are soooooo many helpful people here! nBreanna 16 CPKU

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