PKU.com Community Discussion Forum Parent support Brain Damage????

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  • #7531
    Avatar of Nikki
    TucksMommy
    Member

    My son has CPKU – he’s 4 months old now and he still doesn’t have control of his eyes, he is cross-eyed and it is getting worse rather than better. His ped. said that it should have resolved itself by now, but it’s only getting worse and I’m scared because the eye doc said it could be related to brain damage, and he was trying to skirt around it without scaring me but I didn’t let him. Does anyone know whether an MRI is worth it, does it tell you anything, and how do you know if damage has been done with a baby?
    He cannot do anything but smile, and he can focus on you. he just started smiling a week ago. He doesn’t coo, he won’t grasp an object if you put it in his hand, and he won’t reach for anything. He acts like a newborn, except he smiles back at you and he grunts sometimes. If anyone knows for sure, or if you have a 4 month old, can you give me some advice please? I have a 3 year old but I cannot remember when milestones are reached. What can your 4 month old do?

    #7620
    Avatar of Tracie
    Tracie_PKU
    Member

    Hi TucksMommy, nMay i ask was he diagnosed at birth?
    I am PKU and they did do MRI’S almost regularly. nFor your own peace of mind i would get one done,but talk to the PKU Dr. first.
    Not ped. just because thay may not know much about PKU.
    The PKU DR. may have another test in mind.
    I am 39yrs old w/Borderline PKU.
    So i have a mild case,but my Dr. still wanted MRI’s done to find out what was going on.
    Please try not to panick.( I know easier said than done)
    Hang in there. Iam here for you .
    My name is Tracie ,and i’m on here all the time.
    I will try to add you as my friend req.
    Take care, nTracie-PKU

    #7621
    Avatar of Tracie
    Tracie_PKU
    Member

    Hi Tucksmommy,
    Its Tracie again.
    I found some info.
    Instead of an MRI you may also ask for a CT scan. nThat is a Cat Scan.
    It will take a look at his body and bone growth nas well as brain growth.
    It sounds alot safer than a MRI at such a young age.
    Once Again iam here for you.
    Take care, nTracie-PKU

Viewing 3 posts - 1 through 3 (of 3 total)
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