PKU.com Community Discussion Forum Parent support anyone ever hit 0 phe level?

Viewing 12 posts - 1 through 12 (of 12 total)
  • Author
    Posts
  • #8792
    Avatar of carrie
    clenk
    Member

     I;m a wreck. I just got the results from my 6 week old daughter's tuesday's test and it was 30!! We work on the 120-360 scale. Normally hovering between 150-200. She had her 6 week growth spurt and now her numbers have dropped to 30- so likely now- thursday that means that they are likely 0? is that true? what does that mean? how dangerous is this?

    #8793
    Avatar of Breanna
    BreaMarie91
    Member

    The only time my phe levels have dropped that low was shortly after I began taking Kuvan. If your daughters phe levels drop that low it just means that her body is breaking down more phenylalanine, most likely because of her growth spurt. As long as her phe levels aren't this low over a long period of time I am sure she will be just fine. On a positive note this may mean that you will be able to increase her phe tolerance and allow her to eat a little bit more.

    Take care,

    Breanna 18 CPKU

    #8794
    Avatar of victoria
    dancerr17
    Member

    as far as i know keeping a low phe is good…as breanna said that could mean that she can handle more protein …my sister was like that when she was a baby they actually had to give her regular milk because her protein level was low ….if your concerned just talk to the babys doctors about it so they can reassure you of what you need to know

                                   take care

    #8797
    Avatar of carrie
    clenk
    Member

     Well my fear is will a low phe have the same reprecussions as low calories- where the body tries to metabolize the muscle and have her numbers shoot through the roof?

    #8799
    Avatar of medina
    medina2009
    Participant

    I think you should create a good balance between regular milk and comida . when my baby was one month old , his dietition gave a very bad regim to him . when his phe was up , she said  you should give him 18 bushel formula and 3 bushel regular milk . when the phe was down , she said give him 18 bushel regular milk and 3 bushel formula. and we decided to give regim to him ourselves . then it was good . when your baby phe is so low , it means that you gavehim a lot of formula . so you should reduce the amount of it. and in these situations the best dietition are parents .

    #8800
    Avatar of Cook4Love
    Cook4Love
    Member

    Levels that bottom out (go to 0) due cause a catabolic reaction which then causes them to shoot up.  When they were 30, did the clinic recommend adding more breast milk, enfamil to the low protein formula?  Upping the low protein formula (to get adequate calories and protein) as well as adding more phe is what we did when Molly was a baby and went through a growth spurt.  The clinic can do a full panel as opposed to just phe and tyr and that will tell them if your baby is getting enough calories to support the growth spurt. I hope everything went well.  All of the growth spurts that occur the first year can me nerve wracking.
    Take care,
    Brenda  

    #8801
    Avatar of carrie
    clenk
    Member

    When we found out the numbers were 30 was a couple of days after the test was taken (we live out of town and the process where we deliver it to our local hospital and then it gets transfered to the children's hosptial for the test is a long one!)  so i don't know if they ever hit 0 – i 'm guessing we'll know next week when we get new numbers. 

    We were told to increase the phe intake by 25% (and we did a bit more than that for the first 48 hours). So we shall see what happens next.  During the previous week i followed the amount of phe we'd been using but when she wanted more i just gave her more formula. I didn't realize i should be giving a constant percentage of phe vs formula (63% formula and 37% phe or whatever it is) b/c i thought that even if she was more hungry (we're thinking it was a growth spurt) then that didn't mean she could metabolize more phe in a day- i guess i was wrong. maybe?

    THis is such a learning experience and i find myself frusterated/panicked/stressed b/c i 'm learning at the EXPENSE of my poor child!! And when she doesn't share well in kindergarten or fails her calculus test in grade 9 will it be b/c of this week? I just hate feeling responsible and not knowing- will it be ok- have i damaged her- and i won't ever really know- and i'm struggling with that too. It has been just over a month since diagnosis and while we've been pretty good so far( in range- fluctuating in range but in range) i'm realizing how one bad number can really throw everything out of whack. 

    sigh……………………………….

    #8802
    Avatar of Cook4Love
    Cook4Love
    Member

    Molly's levels went up a few times the first year due to growth spurts and illness and she is doing wonderful.  She maintains great levels except during illnesses.  While she does not share well with her brother, she is at the top of her class.  All I wanted that first year was to fast forward, see that she was okay and then rewind and enjoy her instead of worrying all of the time.  Here is your fast forward — a link to a video of Molly:
    http://www.youtube.com/watch?v=yxx0oZUW8Go

    #8803
    Avatar of carrie
    clenk
    Member

    thank you- you have a wonderful daughter!!  

    #8805
    Avatar of Janice
    mommyof3
    Member
    My son's levels dropped below all the time his first year, since then they have been fine, but as a baby they where always so low, it is because they are going through growth spurts all the time  He is doing great now and  i dont know if it is related at all but he has a high phe tolerance.  My older daughter never dropped below 0 and she is 7 now and her 3 year old brother gets more than double the amount of phe she gets.  
    #8806
    Avatar of Eugene
    Eugene
    Participant

    There is a range that your PHE level should be and going below the recomeneded level is also bad. 0 is bad! 

    Here is my last profile notice the range on the far left.

    http://www.pkutools.com

    #8810
    Avatar of Taishawn
    TaishawnC
    Participant

    hey im Taishawn can i ask yall something what did yall do when yall got in phe trouble like your level got 2 high what did yall do need helphave PKU

Viewing 12 posts - 1 through 12 (of 12 total)
Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional