PKU.com Community Discussion Forum New to PKU.com Please help me

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  • #7176
    Avatar of valerie
    valjennings
    Member

    [/SIZE][SIZE=16]When my son was born, they told me he was PKU positive. My husband is in the military and we moved bases when he was 2 months old. We were told a metabolic specialist would be available at the new base, and there wasnt, so the pediatrician there decides he will just send the tests off. At a year old, the ped says my son is in the normal range and says my son doesnt have PKU. My husband and I believed him. Well I took my son in who is 4 1/2 now at our new base to get checked for ADHD and his new ped saw that he was PKU at birth and decided to do the test. My son had a level of 31. What exactly is the normal range and is 31 high? Please help me, my husband is deployed and I am going crazy until I can meet with a specialist.

    #7185
    Avatar of Breanna
    BreaMarie91
    Member

    For starters, I would highly suggest you hunt down a metabolic specialist/medical geneticist. Not to be rude, but most peditricians/family doctors have little to no knowledge of how to handle PKU. The doctor who told you that your sons levels were within normal range was clearly very wrong. At the time was your son on the metabolic PKU formula? If he was that would explain why his levels were normal, but without that formula and a special low protein diet his levels will be severely high like they are now.
    That being said, 31 is extremely high. People with PKU are suppose to keep their phenylalanine levels between 2-6mg/dl. PKU isn’t something that you can get and it will go away, if your born with it then it’s there for life. Until you meet with a specialist I would suggest avoiding feeding your son high protein foods (meat, dairy, most grains, beans, nuts etc). Try to feed him things like fruits, veggies, fruit snacks, hunts lemon pudding and other things that say 0g of protein. All of these have some phenylalanine, but it’s better then feeding him something like meat.
    I hope this helps! And I would definitely say get your son to a specialist as soon as possible so that you can lower his levels. nBreanna 16 CPKU

    #7189
    Avatar of valerie
    valjennings
    Member

    Thank you so much! I couldn’t get answers about the levels from anyone. The ped was saying that 31 was slightly elevated. They are in the process of finding us a specialist now. We dont have one here in the area. Thank you for the food suggestions. I am going to change his diet now.

    #7631
    Avatar of Tracie
    Tracie_PKU
    Member

    Hi Val, nFirst my husband is a vet.(GO ARMY)
    I am PKU and i know that if your child requires a specialist you can actually transfer there.
    May i ask where you are stationed? nAlso is it still Champs Medical?
    Depending on where you are the best clinics i know of: nSD CALIFORNIA Childrens Hosp. nLOS ANGLES CA. CHILDRENS HOSP.(That is where i was.
    By law i believe the military has to provide that special care,and make transfers available
    to you and your husband.
    I would check into the state where you live?K
    I will do a friend Req. if you need to talk or help finding someone suitable.
    Don’t wait time is important for your child.
    Take care, nTracie-PKU

Viewing 4 posts - 1 through 4 (of 4 total)
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