PKU.com Community Discussion Forum Parent support Does horror related to pku ?

Viewing 7 posts - 1 through 7 (of 7 total)
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  • #9674
    Avatar of medina
    medina2009
    Participant

    hi everybody . I have a  pku boy about 2 year and 8 months . he has very horror . he afraid of everything . he afraid of darkness,  the loud volume of tv or even screen . when my husband and I sitting in the living room he has fear to go  to his bedroom and bring his cars lonely ,while we see him .  he consists on his father or me go with him to his bedroom and continually says Arshia scares , Arshia scares . I want to ask can it be related to his pku ? because I heard horror in these childrens is  much more than it in healthy children . I would be happy if anyone give me some information about it .

    #9676
    Avatar of carrie
    clenk
    Member

     If his levels are too high then he can behave differently- have increased anxieties and fears. If his levels are within range for a prolonged period of time it should start to dedrease a little bit. 

    Have you been able to keep his levels constant? how are you managing with the problems you've had with the dietician/doctor – are you able to feed him low pro foods? What does his diet look like? 

    #9677
    Avatar of medina
    medina2009
    Participant

    thanks for your reply clenk . I myself know that high phe causes more fear and anxiety . but we control his phe and every two months we have one phe test . his phe always is aproximately 6 mg/dl . I wanted to know that without considering the number of phe , this fear is normal in pku children ? or maybe this fear is not related to pku and is special for this age of childhood ?

    #9678
    Avatar of Snuffles
    Snuffles
    Participant

    Some the signs you discribed nearly like signs of Autsim  or Aspburger's sydrome as it seems that he is hyper senstive to to TV's . But I too have high function austim myself and thunder and lightning storms sends me wild and scare me somthing terrible. I think he can hear something that most people can't hear, ie: high freqencies that people don't hear but cats and dog go mental at storm all because of those freqencies.

    I wear earmuffs on stormy nights, or when me ears ache I wear furry ear muffs to dampen the noise around me. Try getting him to wear ear muffs to tone down his hyper senstivity to TV's. People with Austim seem have hypersensitviy to certin colours, slights and sounds. I used be afraid the dark, so I slept with a bathroom light on. As for been with people I often played alone as I didn't always get on with me peers whist been younger.

    Have a Dr have a look at him, to confrime it's not his diet doing it.

    #9679
    Avatar of Snuffles
    Snuffles
    Participant

    Some the signs you discribed nearly like signs of Autsim  or Aspburger's sydrome as it seems that he is hyper senstive to to TV's . But I too have high function austim myself and thunder and lightning storms sends me wild and scare me somthing terrible. I think he can hear something that most people can't hear, ie: high freqencies that people don't hear but cats and dog go mental at storm all because of those freqencies.

    I wear earmuffs on stormy nights, or when me ears ache I wear furry ear muffs to dampen the noise around me. Try getting him to wear ear muffs to tone down his hyper senstivity to TV's. People with Austim seem have hypersensitviy to certin colours, slights and sounds. I used be afraid the dark, so I slept with a bathroom light on. As for been with people I often played alone as I didn't always get on with me peers whist been younger.

    Have a Dr have a look at him, to confrime it's not his diet doing it.

    #9680
    Avatar of medina
    medina2009
    Participant

    thaks for your reply Snuffles .  I know about Autism and asperger syndrom . but my doesnt have the factor of this disease . these children like to be alone and cant speak very well and dont have good five senses . but my son speaks very well . he is so social he prefer to be between crowd till lonely . and all his senses work very good . ( taste , hear , touch , vision , smell )

    #9703
    Avatar of Snuffles
    Snuffles
    Participant

    That okay Medina2009,

    I am glad to help you cope with your son…….with the other members in the forum. I am a classic pku sufferer and my my poor parents have to put with my antics of falling ill after eating too much meat and heave hoing…..[what a waste of good food] But the most cumbersome thing I have to cope with is noise as I suffer from Aspburger's Sydrome and I find it far from fun.

     My super senstive hearing cause huge issue when I  am living everday life, I normal wear industral earmuffs. I find noise hurts, espeically backgroud noise fore ground noise clash togeather and it's like one great big babble. Worse still ,is when little kids start squealing, I know I have to tolerate it but shred my ears to peices. lThe weather effect me the worse espeically stormy unstable  days, ears will start to ring and as it starts intensfiying it is constent high pitch squeal.

    My ear speiclist says it is Tinitius…….. Plus she says the more I the muffs the worse my ears will.come, they will become more super senstive, too late. I think they have become too senstive as in the resteraunt I had wear my muffs too whist with the other diners..

    Weather has horribly messed my hearing as before big storm I get get really unwell to the point I am unable to function, I spend all day in bed dizzy and with huge headache!!!! I am relived you son does't have Aspburger's……..not fun from my point of view. I had Autsim before that too…….It messed my childhood, made it impossible to mix with my peers anywhere school, the works!

Viewing 7 posts - 1 through 7 (of 7 total)
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