Community Discussion Forum That’s PKU life! Beyound Frustrated…..

Viewing 6 posts - 1 through 6 (of 6 total)
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  • #7860

    Well lets see I have 2 varient kids not on diet….my youngest levels are driving me crazy….he was born with classical levels that suddenly plumated…we took him off dies for a month and he was doing perfect then started skyrocketing again…we put him back on diet but his levels just keep climbing…I am just frustrated and worried about how these level jumps are going to affect him long term…he is only 4 months old…very frustrated…sorry just needed to rant….


    Just wanted to add that I have 3 boys…..oldest two varient youngest is a whos knows….in case i wasnt clear…

    Avatar of Sue

    i thought i was done “dealing” with explaining to my friends what pku is, and how my son’s diet affects his health…i should have known better. the only friends i would trust my seven month old to now are nurses who UNDERSTAND. who knows what they will sneak him! everyone else just thinks i’m over-protective. well, let them! right?

    Avatar of Pete

    I was the PKU kid- I really do not know how my dad kept me safe with babysitters.
    However, now as an adult, I have had trouble finding out what kind of treatment I should have or who can read my blood test properly. I called a state health department number that is supposed to specialize in PKU, but the lady told me they only work with children. I told her I only wanted to have help interpreting my results and she was OBNOXIOUS. I ended up telling her she was a waste of my tax money and hanging up. Not one of my finest moments.
    I tried to go back on a formula- which, by the way, is a term I HATE- but I was unable to stand the taste. I think if I could conform to a modified diet it might help. Or find an alternative treatment. PKU is annoying.

    Avatar of Tracie

    Hi everyone, nMy name is Tracie,and i have PKU.I have a healthy 11 year old girl. nMaybe i can give you some words of encouragement.
    I am classified as borderline pku,which means my body can tollerate some protein,but the Drs. don’t know how much or what effects it would have on my body.
    If your child has been diagnosed pku of anykind do not take them off of formula even if levels drop.Keep your Drs. informed of the fluctuation. nMy parents took me off diet when i was 11 years old.I am now 40yrs(OUCH)lol.
    I started back on diet when i wanted a child. nThen took myself off again,and paid a price for mentally. nFor an infant remember there brain is still growing so keep the baby on diet(Formula).
    If you don’t it can cause learning problems as well as brain. nUnfortunantly we (PKUers) have to inform all other Drs. not our PKU Dr.
    For our other patients not infant,and can swallow pills look into Kuvan. nThat is what i currently take i only have to take 4 pills aday,and no formula.
    I would say get in contact with your dietition. nHe or she can recommend other sources of besides formula to take.IE: Kuvan,flavored cold drinks packs,and even chocolate bars. nAll have what our body needs to keep nus healthy.There’s even more out there.Don’t give up. nHow to deal with the friend problem.Oh my gosh
    where i live they hunt there food still.I am the only person in this entire area who has PKU.(Thats always fun)LOL nSo i tell them i am allergic to ALL protein. nThats just the easy way of puting. nGet you r children use to eating fruits and veggies you’ll be surprised that they will actually turn down other offers. nAlso Loma Linda Foods in California has all supplimental food there.Forexample cheese,pasta,and even bread.Once again get the kids started early,and they will know no different.
    I hope i was able to help in some way. nHang in there you both are doing a wonderful job.Remember only a MOM knows how to take care of there own children the best way. nTell your friends to look PKU up on the PC,and become knowledgable before saying some silly.
    Your doing a great job.Babys didn’t come with instructions.Even when the good Lord made him or her extra special….(PKU)
    I’m here for both of you. nTracie-PKU

    Avatar of Breanna

    Torrinsmommie- I am sorry it took me so long to respond to this message. I hope by now you have figured out your sons level. I personally would keep him on the low protein diet until you are able to figure out what you should do. It is better to be safe than sorry, and although low levels are not good either I think low levels are a little bit safer than high phe levels. At least if he is on the diet, he will be getting the formula in case it turns out that he does need it.
    SNater26- As far as babysitters go, my family was fortunate enough that on the rare occasions when my parents when out they left my siblings and I with my grandma. She was amazing! By the time my parents began leaving us home with my older sister when she was thirteen, I was already ten, and I knew how to deal with my diet on my own. I see no problem with leaving a PKU child with a babysit. How well it works out will all depend on how well you educate the babysitter, and how willing they are to learn. Personally in this situation I don’t think a teen babysitter would be the best choice, because as a teen myself I know teens don’t think sometimes LOL! If possible family members, or adult friends might be a better choice.
    Just rememeber your babysitter is only going to know what you teach them.

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