PKU.com Community Discussion Forum Adults and PKU new to group

Viewing 15 posts - 1 through 15 (of 21 total)
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  • #9437
    Avatar of tammy
    pkuX2p
    Member

    i live in indiana so anyone in and around indiana with pku i would like to connect with u my goal is to find people willing to pick a day outta the summer and designate that at PKU summer picnic social  for us with pku to meet and introduce our families together.  I eventually want to get local sponsers to donate $ towards the research for the lacking enzyme we all have or are there lacking, so please get intouch with me to help me find support for pku.  260-444-4400

    #9438
    Avatar of stephanie
    taz4278
    Member

    wish i was closer

    #9439
    Avatar of lynsey
    lily231987
    Member

    ellotaz4278

    welcome to the group

    im lily i have classic pku n theres only 3 ppl wiv pku in my home town but iv never met any of them

    lily

    #9448
    Avatar of tammy
    pkuX2p
    Member

    well were i live there is 4 and 3 of the four im related to my son AJ, my Ex-husband ANDY and a friend named owen the i met in the hospital when i was pregnant. where do u live? my advise never concieve with another who has PKU its bad news.

    #9449
    Avatar of lynsey
    lily231987
    Member

    hiya pkuX2

    ys it so bad havin a baby wiv a pku partner ? wot can happen other than the kids has pku ?????????????

    i live in boston lincs uk

    where do u live pkuX2 ?

    im gunna make pku posters n put them round town to see if i get any responses i know there about 3 but i dont know where they r n maybe they mite see my poster n mite get in touch wiv me hmmmmmmmmmmmmmm i never know there mite b more than i think i can only try thow :) i just hope it gose well

    lily

    #9450
    Avatar of tammy
    pkuX2p
    Member

    i live in indiana usa severs behavior problems, heart problems with not being formed all the way, good luck with ur posters

    #9452
    Avatar of Rachael
    Rach_08
    Member

    hello eveyone my name is Rachael and im 30 years old, i live in brisbane australia, i was diagnosed at 2 months of age and i now have a few disabilities but nothing major and i am looking for some friends/pen pals that has pku as i dont really talk to anyone here in brisbane that has pku.

    #9453
    Avatar of Ilana
    LAmama
    Participant

    Heelo,

    I'm a PKU mom of 6 months old Elinor. Looking to meet PKU parients to share and maybe guide …

    I frrl totaly confused and lost in current situation…

    Please help…

    Thanks

    #9464
    Avatar of Cook4Love
    Cook4Love
    Member

    The first year is very overwhelming, but you will get through it.  Do you have any specific questions/concerns or just an overwhelming feeling of confusion?  All I wanted that first year was to fast forward to Molly being 5, see that she was ok and then rewind and enjoy her instead of always worrying.  Here is your fast forward:

    Brenda, Founder of Cook for Love

    http://www.cookforlove.org

    #9465

    My Finace and I have a New Son . He was a preimee in the NICU and was jsut diagnosed.

     We are going through a great deal of emotions and are jsut starting this journey.

    I may be very well the one on the rare side that has Both genes as I have distant cousins that have it . They are sever and profound as they were before the diets came.

    I can not believe it passed my brother up and and sister up and landed directly on me. I guess I got the Lucky Lottery ticket.

    I do not for see my fiancee beeing the carrier. None of her family mebers ever had it as far as they know.

     

    #9466
    Avatar of Breanna
    BreaMarie91
    Member

    PKUParent98611,

    First of all congratulations on your new little boy! I cannot imagine the emotions your family must be going through, but please know that with proper treatment your little boy will lead a very happy, healthy, and productive life. Treatment for PKU has come so far since it was first discovered, and I am sure it will continue to move forward.

    On a different note please do not think that this diagnosis was anyones 'fault'. In order for your son to be born ith PKU that means that he had to receive two PKU genes. Each parent can only pass on one gene, which means you passed on one PKU gene and your fiancee passed on a PKU gene. You and your fiancee are carriers, which means you each have one PKU gene and one non PKU gene. You obviously do not have PKU, you are simply carrying the gene. Your brother and sister could also be carriers, but the only way they would have children with PKU as well would be if they married someone else who was a carrier and could pass on a PKU gene as well.

    Take care, and use this website. Having a support system in place will help a lot, and I am sure everyone here would be more than happy to help you along the way.

    ~Breanna 19 year old adult with PKU

    #9467
    Avatar of lynsey
    lily231987
    Member

    hiya rachael hun

    im gunna add u as a friend hun :) i didnt realise u were on ere lol

    silly me ha ha ha

    lily x

    #9468
    Avatar of lynsey
    lily231987
    Member

    hiya pkuX2

    i rite i didnt realise that, thats realy strange i didnt know that cud happen so i guess ya baby is deffo more at risk if both mum n dad have PKU then yad  baby can have manyer things wrong awwwwwwwwwwwwww that sounds so sad n such a sad nding to all the hard work that has to go in to havin a healthy baby too :(

    lily x

    #9470
    Avatar of stacy
    ch196u
    Member

    Hi fellow pku family, I'd like to introduce myself. I am Stacy R from Lakewood, NY and I am a foster parent. I have recently had a new placement of a 14 yr old young lady who has PKU. I joined this group because I would like to learn all there is about this condition. I hope you ladies could help me on this , She is only coming to me on the weekends as of right now and they send her meals with her. She gets her food from I think it is called cambrooks foods. I understand that she can only have 10 grams of protien a day. Cucumbers and apples are the only food that has 0 grams of protien. My goal with this young lady is to make this as positive as possible. Her past has been very negative with her pku. She has been known to cheat, her weakness being chicken. What I need from you is this…what kind of menu do you have for your children. I feel so bad for this young lady having 2 pcs. of pku toast and a fruit cup for dinner. I want to surprise her next week with having a pku friendly meal just for her next week. I could even let the staff at the home know what pku food I would need before hand. We had her for Easter and I felt so guilty eating the ham and beans but when fixing her plate she made it all ok. I made her 1 cup of mashed potato's w/o milk and butter, she had pickles of every kind, she had her pku chicken nuggets( made from mushrooms) with bbq sauce, cranberry sauce, apple sauce, cucumbers, needless to say her plate was full and the look on her face was priceless…she said I have a full plate of food! like it was the first time in her life. I now when I shop find myself looking at every label in hopes to find a food that she can have but I learned quite quickly that the labels all lie. They say 0 g of protien but you have to look further, if it contains milk or soy it is a no no or counted as 1 gram. very discouraging. So I hope joining this group will help me make her pku not seem as such a negative but a positive. We have a contest with her when she drinks her pheno-x my kids get the same amount of drink as her and they see who can finish it first. She really enjoys that. I have asked her why she hasnt cheated at my house yet. Her answer was cuz you don't keep anything that I would want to cheat with. lol just for the record I havent changed my grocery buying for her. I am told I need to lock our foods up from her at night, but found out later that she knows how to break into all the locks imaginable, so I posed the question what is the sense? She has stated she doesnt want to cheat. Well ladies thank you for any info you share with me. I want to help this young lady so much!

    #9471
    Avatar of Cook4Love
    Cook4Love
    Member

    It is wonderful that you want to help this young lady.  Having such a positive influence just might be what she needs to stay on diet.  There is a culinary website that launched last summer called Cook  for Love that is devoted to low protein cooking.  It was formed by two moms (I am one of them) and is a free resource to the PKU community.  I went to culinary school when my daughter enrolled in kindergarten.  I wanted to create recipes that we would share together as a family.  Hope you all enjoy them!  — Brenda http://www.cookforlove.org

Viewing 15 posts - 1 through 15 (of 21 total)
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