PKU.com Community Discussion Forum Parent support how to overcome seizures ?

Viewing 5 posts - 1 through 5 (of 5 total)
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  • #9054
    Avatar of medina
    medina2009
    Participant

    one of the pku children that I know him, is about 18 month .  his phe always is low  and at the during of one day , he has seizures . he can not walk yet . he has a numb body . now I want to ask this question : Could be these problems related to pku ? or he has another problem rather than pku ? how could he overcome seizures?

    #9064
    Avatar of Nicole
    Nicole1982
    Member

    Hi there…

    Seizures can be related to pku but ave only heard of it occuring in people with very high levels of protein who ave been off diet for many years.

    But to be having seizures whilst on a low protien diet seems very strange.. you should see your consultant!!!

    Nic

    #9070
    Avatar of Breanna
    BreaMarie91
    Member

    If his phe levels are too low he could be catabolic. This means that he is not getting enough phe to grow properly, so his body is getting phe from other sources of protein like his muscle. Since muscle is pure protein if his body is breaking muscle down to get phe it could actually increase his phe levels…does that make sense? It could be related to his PKU, so I would let his parents know they might want to bring this up to his specialist.

    #9085
    Avatar of medina
    medina2009
    Participant

    thanks a lot for your replies . his parents took him to many specialists , but unfortunately no one could do anything for him.

    #9118
    Avatar of kelly
    pku sucks
    Member

    hi everyone if you have facebook then plz join my group. its called pku anyone?

    thanks x

Viewing 5 posts - 1 through 5 (of 5 total)
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