PHE levels

PHE levels

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PHE levels

May 13, 2010 in Uncategorized

Hi my name is Tiffany amd i have a son named Maverick (hes 4 months old)who has PKU. His level at birth was a 6.7 and a week later it was at 18, after we started him on Periflex infant it dropped to a 0 and added formula back until we were on complete regular formula because we couldnt get is level to budge off of 0, so he got sick about a month ago and his levels shot up to a 40!? we cannot figure it out so we put him completley back on the periflex infant to get his levels back down, it went bake to a 0, after a week of adding 3/4 goodstart and 1/4 phenex it was back to a 27. i am following the docs orders to a T and cannot figure out why his levels keep doing this, his specialist says he has never seen an infants levels all over the place like this, has anyone ever had this problem? We did switch from periflex to phenex but i dont think that would matter? Dose any one use Phenex-1 maybe i am not mixing it right? someone please help me i am so stressed that i am hurting mvaerick and i am trying so hard! oh another things is at 3/4 goodstart and 1/4 periflex before his levels went to a 40 his level was at a 0.2

7 Reviews of PHE levels

  1. Registered: Feb 1, 2010

    Posts: 0

    Tucson, Arizona

    Hi, Tiffany. I am Kristi. I’m a 27 year old with PKU. First off, I want to say don’t get too stressed. Everything will be okay, I’m sure. When I was his age, my doctor was giving my parents the wrong information and so my levels were bouncing around also. I honestly don’t know what ranges my levels were. Please do keep in mind that for phe levels to jump with sickness is very normal–mine still jump a bit when I’m not feeling well. It does sound like Maverick’s level is bouncing a lot, but I’m sure you and the PKU specialists will get it under control soon. I am not real familiar with those formulas, as I’m on the adult PKU formula. At one point, I decided I was going to really tighten my belt diet-wise and so my levels dropped into the 0.4-0.8 range. My dietitian was on top of it and helped me figure out how much phe I needed without going overboard. Good luck! I wish I could help more, but if you ever have any questions, please feel free to contact me.

  2. Registered: Apr 13, 2010

    Posts: 0

    plant city, Florida

    thanks so much i know i am doing my best but i feel like its not enough lol i am a nervouse wreck!

  3. Registered: Feb 1, 2010

    Posts: 0

    Tucson, Arizona

    If you search the depths of blogs on here, I’m sure you’ll find a few similar cries for help from parents of babies with PKU. I think just about all parents go through what you’re going through, at least to a certain extent. Hang in there! Where do you live? Does it seem like you have a good clinic that supports you?

  4. Registered: Apr 13, 2010

    Posts: 0

    plant city, Florida

    we live in florida,we acctualy just changed specalist because i didnt feel that way but now i feel very supported thanks so much!!

  5. Registered: Nov 12, 2009

    Posts: 0

    , Georgia

    Tiffany,
    I have a 7 month old baby boy with PKU, and I know exactly how you feel! Dylan’s levels were 6 when he was born, then 36 the next week!! His levels have been up and down since then.His levels have done from .5 one week to 10 the next back to 1 then up to 8! Luckily, we have been able to keep them down for the last month and it has been a great feeling!! I’m not sure about the way you are mixing the formula. I think all clinics do it a little different. We mix all of Dylan’s formula in one container for the whole day. His dietician tells me the exact number of grams of Periflex and Similac to use. We adjust this amount as needed based on Dylan’s levels. Is Maverick drinking all of his formula? I know it is hard, but things will get better! I feel so helpless when Dylan’s levels are high or low! It just doesn’t seem fair to have to stress about levels and eating instead of enjoying your baby, does it? That’s how I felt for a long time, but lately, I have been able to stop stressing and really enjoying having a wonderful baby! It is always going to be hard, but I know in time it will get so much easier for me and for you! Good luck and send me a message anytime!

  6. Registered: Oct 1, 2009

    Posts: 0

    Tucson, Arizona

    i have an 8 mounth old with pku and when he was born his levels were just like that and even now we are still having problems but all we do is just follow the drs orders and that is really all you can do. it will get better but thats alli can think of but im a new mom ith a son with pku and i dont really know anything else to do all but that so…goood luck and let me know how things turn out..:)

  7. Registered: Apr 13, 2010

    Posts: 0

    plant city, Florida

    we found a new specailist and nutitionist, they are amazing the other ones were kinda jerking us around and they just wernt good enough for my baby,they kept saying they didnt know why his levels are jumping around it must have something i was doing, and it wasnt, mow we mix his formula all in one container for the whole day and we wernt b4 so we really had no idea how much PHE he was getting, but i am feeling alot better now:)

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