PKU.com Community Discussion Forum What’s the Phe? Behavior Issues

Viewing 15 posts - 1 through 15 (of 28 total)
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  • #4378
    Avatar of Tamara
    tamara
    Member

    My 2 year old daughter has elevated phe levels around 4.6 and is not on a special diet. She seems to have alot of built up aggresion, mood swings and unpredictable personality. I have been told this is not a result of her condition. Does anyone else experience this with thier hyper phe child?
    thanks,
    Tam

    #4387
    Avatar of Angela
    angelalewis
    Member

    Of course, I am not a doctor but my daughter’s levels were around 14-18 when we got home from Russia (adopting her) because we did not have access to low protein food and formula. Her behavior was terrible. We quickly got her levels down to 2.7 and she is a totally different child. Her levels were not under control in Russia and they would tell me how stubborn and rebellious she was. She is very pleasant now. I can’t say whether it is the control of the levels or a loving family of her own that changed her behavior.

    #4396
    Avatar of Rebecca
    splshglitter
    Member

    4.6 is not high. their levels are soppossed to be between 2-6 n4.6 is perfect.

    #4406
    Avatar of katie
    katieluper
    Member

    my two year old daughter is the same way when her levels are a little out of the norm she starts to act very moody and upset all the time and her doctors say that it could be a result of her levels being to high my daughter is on a diet and sometimes when she is sick and not drinking her formula this happens. I have talked to other kids older than her who say that when they start to get high levels they are the same way i know this will sound wierd but it is almost liek she is pms’ing which is not something i am ready to expierence yet with my two year old maybe in 14 more years.

    #4437
    Avatar of Breanna
    BreaMarie91
    Member

    Well for me my levels are supposed to be between 2-6 but I’m not sure what your childs are supposed to be because I don’t have Hyper I have Classical PKU. But when I was little everyone I know said I was a really emotional and moody girl, plus really aggresive. And as I got older it got better, I can still be moody now but for the most part now it’s only when I have levels higher then around 6 or 7.

    #4624
    Avatar of Debbie
    Vixen1
    Member

    I have recently gone back on my PKU diet. But loved ones already tell me that I seem happier, than I was when I was off the diet. I never noticed that I was so either unpleasant or unhappy. I do feel better, and my PHE levels are still high. My first level count was 30.8, and it has come down considerably. I do feel much better.

    #4633
    Avatar of sandra
    s_y007
    Member

    hello, my name is sandra and am from Egypt i have a PKU sister.
    my sister was off the diet since she was a child but she got married a year ago and now she’s expecting, she has been on the PHE diet for 6 months now, but there has been ups and downs in her level, so if anyone cud tell me is that wrong or dangerous for the baby or its not that serious?
    Thanks,
    sandra

    #4634
    Avatar of Breanna
    BreaMarie91
    Member

    Hi Sandra, It really depends on how high your sisters levels have been getting up too. Although basically from what I’m hearing from everyone it is very very important to have your levels under control when your pregeant. I’m only 15 and my dietian has begun to stress how important that will be for me when I decide to have children someday. If your sisters levels are high and you or her are worried I’d really suggest getting your sister to see a doctor (I’m not sure if she sees a PKU doctor regularly or what). I hope that helped somewhat. nBreanna

    #4651
    Avatar of debbie
    debbieco
    Member

    I have been told that the odd elevated phe levels throughout pregnancy would be ok but as long as it is one or two times and controlled most of the time.[/COLOR] I guest how high the levels get to as well.

    #4666
    Avatar of Kenneth
    kennyboy
    Member

    This message is for Sandra. I am seventeen years old and have classical PKU. I have done an enormous amount of research on PKU on women in pregnancy. I also educate the young and the pregnant. I have found (through studies and doctors) that it is NOT good at all to be off diet when a woman is pregnant. This can effect the baby mentally (if it has PKU) even when in the womb of the mother. When the baby is born and mother has not been on diet, this can often times, result in mental retardation (if the baby has PKU) when they are born. Now, depending on the severity of how much the mother has been off diet, will be the severity of how much the babies brain will be damaged (if baby has PKU). Though its completely up to your sister, I would strongly recommend she stay on diet, as she may not know if her baby has PKU or not until it is born. Though I am only seventeen years old, I have seen a fair share of what most decisions can do to a child who was born with PKU.

    #4668
    Avatar of Rebecca
    pku1962
    Member

    QUOTE: “This message is for Sandra. I am seventeen years old and have classical PKU. I have done an enormous amount of research on PKU on women in pregnancy. I also educate the young and the pregnant. I have found (through studies and doctors) that it is NOT good at all to be off diet when a woman is pregnant. This can effect the baby mentally (if it has PKU) even when in the womb of the mother. When the baby is born and mother has not been on diet, this can often times, result in mental retardation (if the baby has PKU) when they are born. Now, depending on the severity of how much the mother has been off diet, will be the severity of how much the babies brain will be damaged (if baby has PKU).” Hello, I’d like to reply to what was said in this young lady’s post. I am a 44 yr. old woman and a mother of 4 sons seriously affected by my PKU. I found out the hard way that you absolutely must be on the diet before you conceive. You kept commenting on if the baby has pku. Rarely do babies born to mothers with pku have pku themselves. I had very little info on PKU pregnancies and was assured by my obgyns-in all 4 of my pregnancies-that being off the diet would not affect my babies. 13 yrs later and now I know. My boys are mildly to moderately mentally retarded, had microcephaly (head smaller than normal) at birth, have severe speech disorders, low muscle tone, A.D.H.D., some autistic-like behaviors, etc. This was a direct result from being subjected to toxic levels of phenylalanine in my system while pregnant with them. None of them have PKU, but are carriers. By the way-I’m new here. Howdy to everyone.

    #4670
    Avatar of Breanna
    BreaMarie91
    Member

    I have to agree with PKU1962, I’m only 15 and my dietian has started talking to me about pregency with PKU and she’s told me that even if you baby isn’t born with PKU if your levels are high it can still effect the baby. She told me no matter if the baby has PKU or not if levels aren’t where they are supposed to be it can limit the blood to the baby and like plu1962 said can cause alot of problems. nBreanna

    #4685

    my son is very very fussy and just not the same person when his levels are off. my dietition said that the levels have to do with it.
    thanks
    heather

    #4700
    Avatar of Breanna
    BreaMarie91
    Member

    Yeah that’s the same for me and my little sister. I can actually start to realize if my levels might be high just by the way I act. When my levels are higher it’s hard for me to concentrate in school, I tend to be more…I guess you could say hyper, and I have alot of mood swings (in another words I get upset easier and things like that) nBreanna

    #4713

    but why do different docters say different things ????? It just does not make since. thanks heather <3

Viewing 15 posts - 1 through 15 (of 28 total)
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