PKU.com Community Discussion Forum That’s PKU life! Other illnesses attributed to PKU

Viewing 9 posts - 1 through 9 (of 9 total)
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  • #6702
    Avatar of Roslyn
    Roslyn
    Member

    Hi, my 6yo grandson was diagnoised with PKU when he 4 days old. Two days ago his parents were told he had ODD. This is apparently something that they can get between the ages of 1 to 3. If they don’t get it then, then they will not get it (apparently) and also only boys get it. He has sever temper outbursts and this is caused by this illness. He has always been a strong boy but when he has these “turns” his strength is tripled. It can be managed by medication. I would like to know more about it but can’t find anything on the web. Can someone help me with some information. nThanks, nRos.

    #6705
    Avatar of
    Anonymous

    wow i have never heard of that, are they sure it is attibuted to PKU?? if u do manage to learn anything i would love to know as well.

    #6708
    Avatar of Roslyn
    Roslyn
    Member

    Yeh, it came as a shock to his parents because they weren’t told anything like this during his regular visits to his doctor. I also found out this morning that he has ADD as well as ODD. I have sent an email to the Clinic to see if they can give me any info. And yes I will let you know if I find out anything. nSee yah, nRos.

    #6710
    Avatar of Breanna
    BreaMarie91
    Member

    Hmm…I’ve never heard that ODD (Oppositional defiant disorder) can be linked to PKU. I know a little bit about it but only because we talked about it in my psychology class in school. When you said your doctor thinks it’s attributed to PKU I got curious and searched it, here is one link I found that might help somewhat: http://www.mayoclinic.com/health/oppositional-defiant-disorder/DS00630/DSECTION=2
    Does your grandson have high phe levels? I know that when levels are high kids can get crabby, irritable, agressive and so on. I’m just trying to think of the possiblities here. From what I know from ODD (which isn’t much so correct me if I’m wrong) but alot of the syptoms are semi similar to those of high phe level syptoms. nBre 16 CPKU

    #6713
    Avatar of Roslyn
    Roslyn
    Member

    Thank you so much for the information you sent I will check out the site and let you know how I went. My son didn’t know what ODD stood for because he is separated from his wife and she is not a very nice person (to put it mildly). The doctor said there were a lot of causes of this and one is neglect. I suppose that would mean if it happened during the years 1 to 3. nThanks heaps, nRos

    #6722
    Avatar of Roslyn
    Roslyn
    Member

    Thank you sooooo much for that web site, it helped me and my son to understand exactly what ODD is, how my grandson could have got it and most of all how to deal and hopefully get over it. My son’s wife was told that he would have to be on medication for the rest of his life. We now know that this is not so. Also, I found out that it is not attributed to PKU as she was told. Anyone can get it if they are put in certain situations. So I am sorry if I have worried anyone of you who have PKU or know someone with it. nAgain, thanks for the help. nRos

    #6724
    Avatar of Breanna
    BreaMarie91
    Member

    I’m glad the website helped ! It was just the first one I found when I searched ODD. nBre

    #6821
    Avatar of Roslyn
    Roslyn
    Member

    Hi all, hope you had a wonderful Christmas and have a great New Year. nMy husband and I went to Brisbane to see the family for Christmas. What a wonderful time we had with our children and most of all with the Grandchildren. We all had the best time and it was great to be with our boys again, as we don’t get to see them as often as we used to, since we moved to Townsville. nThere was only one sad part of the festivities. Our grandson (with PKU) was not accommodated as well as I had thought he should have been. His mother brought him over to see us after they had had their Christmas lunch (with her family) and he and his brothers were so happy to see everyone but there wasn’t any food for him (6yo with PKU) to eat except lollies and at about 8pm he was getting a bit hungry so his mother had to make him a sandwich while the others pigged into biscuits, chips and all the other foods he can’t eat. But, he kept on smiling. He is such a happy boy even though he also has O.D.D. and A.D.D.
    I get so upset when I see this and think that more thought should be taken when they go out visiting, especially on special occasions. nWell, I have had my time on my soap box. Hope you all had a wonderful day. nSee ya!

    #6824
    Avatar of Breanna
    BreaMarie91
    Member

    Ugh, I hate it when that happens. Up until I was about 10 my dad’s side of the family was not accomadating at all. I’m very close with my family because we all live within 20 minutes of eachother or less and so it was really rough when my other siblings wanted to sleep over at my cousins but I couldn’t because my aunts wouldn’t help with the diet.
    Anyway, in 5th grade I decided to go out of state to Michigan with my dad’s family for Christmas. My older sister and brother and one of my younger sisters went with aswell, we were going because my great grandma lives there. I enjoyed being with my cousins, but in all PKU wise it was just a disaster. On Christmas day everybody forgot to make me anything to eat, I was only 10 so I was afraid to say anything so I had to wait about 15 minutes before anybody realized. They only realized because my older sister who was 13 at the time yelled at everybody for making me upset. Then I had to wait another 15 minutes to get my food and by then everybody was done eating and all I got was low pro noodles. Lets just say my mom was not happy at all.
    Talk with the family members who were hosting this party and had no food for him. That’s the only way you can get anybody to make his food is if you let them know what they can make for him. After my mom had a long talk with my aunts they now always make sure to have fruits, veggies and low pro pasta for me and my sister. My mom then usually brings low pro taco salad and orange tapioca salad (it is in Virginia Schuett’s books). Sometimes my aunts even attempt to make low pro desserts for us using fruit, non dairy whipped cream and crushed up grahm crackers and it actually tastes pretty good.
    If all else fails and nobody will make your grandson food, I say take it upon yourself or get his mother to do it and just make something for him to bring along so he has something to eat. We almost always bring with taco salad and the orange tapioca salad just in case and the best part is all my non PKU siblings and cousins love both! They actually call the orange tapioca salad “Orange fluff” and they always ask my mom to bring it. nBre 16 CPKU

Viewing 9 posts - 1 through 9 (of 9 total)
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