Viewing 10 posts - 1 through 10 (of 10 total)
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  • #7457
    Avatar of Peggy
    blueangele
    Member

    My baby may have pku….he has to go in on monday for a retest…i am worried that we didnt catch it in time to stop brain damage….how soon do you need to catch this? He will be two weeks on wednesday and although that seems early to me, some things i have read say that there has been enough time to already have caused damage…i would like to hear from anyone who didn’t get diagnosed until later and what happened if anything

    #7458
    Avatar of Breanna
    BreaMarie91
    Member

    If your son has PKU being diagnosed at two weeks is okay. If he has PKU he will start the metabolic formula and he will be okay. I was not diagnosed until I was 9 days old. My two younger sisters who have PKU were diagnosed at 1 week and 4 days old because my mom knew that they could have PKU, so she had the blood tests rushed.
    If you ever need help I will be more then happy to help! nBreanna 17 CPKU

    #7459
    Avatar of Peggy
    blueangele
    Member

    Thank you for your encourageing words Brea, I am just so terrified that every time I feed him I am causing him more and more brain damage, its a horrible feeling! I just hope they get the results here fast this time and not take too long. I hate all this waiting around, its the worst feeling a parent can have!

    #7461
    Avatar of Breanna
    BreaMarie91
    Member

    I understand that waiting is probably very hard. My sister Gena is 6 weeks old and my mom hated waiting for the blood tests to come back when she was first born. If he does have PKU he will be okay I’ve talked to others who have PKU that were diagnosed at around 20 days old and they are doing ok. nThe best of luck to you and you family!

    #7678
    Avatar of Tracie
    Tracie_PKU
    Member

    Hi BlueAngel, nTry not to worry.(I know better said then done) nEven if he does like Bre says “he will be fine”.
    All it takes is Knowledge,and a special diet.
    We are all here 2 support you. nBest Wishes,
    Tracie-PKU

    #8270
    Avatar of Antonetta
    punkin4675
    Member

    My little girl had her 2nd test at 10 days old and by 14 days we had the results. She is now 5 months old and has been on the phenex and gentle ease ever since and it just starting baby food. She is meeting all of her milestones for her age and is doing great! Please don't worry, I was worried at first but she is doing just as well as her big sister who does not have PKU.  

    #8283
    Avatar of Janice
    mommyof3
    Member

    My daughter was not diagnose until she was almost 6 months old  she is now 6 years old and is doing great, she did go through some therapies to help get her to this point but she was done before she was 3 and now she is doing wonderfully in school too.

    #8295

    when i was little i wouldn't drink my formula, and they had to make me drink it throught a tube up my nose, i can still remeber that, but i'm pretty sure i'm fine now and i'm sure your baby will be fine too.

    Jack 15 ;)

    #8343
    Avatar of petrina
    batwoman
    Member

    It is a worrying time with a newborn at the best of times but this added pressure of ?pku must be so hard on you. However ,please try to relax as your baby will be fine. If pku the diet will give your child the perfect amount of vitamins/minerals/nutrition that is needed and often us pku-ers are far healthier than the ordinary Joe soap! (as long as we take the medicine etc of course!)

                       I think you should speak to your dr about your worries…. i actually rang the lab myself for the result when my son was born  as i have pku and i really wanted to know his result !!!(He is non-pku). Perhaps they will rush through the result for you…….

                       Good luck… thinking about you…………..let us know…….

    #8344
    Avatar of petrina
    batwoman
    Member

    oops just realised that thread started in 2008 !!! I think perhaps her son is non pku!!!

Viewing 10 posts - 1 through 10 (of 10 total)
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