PKU.com Community Discussion Forum Adults and PKU adults and pku

Viewing 15 posts - 1 through 15 (of 76 total)
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  • #6377
    Avatar of anne
    annepku
    Member

    hello my is anne i had learnt about my disorder when i was about age of 18 at time i was planning to have a family sadly things went wrong if any one wont’s information on pku i will try to help hope it hear from anyone soon

    #6378
    Avatar of Breanna
    BreaMarie91
    Member

    Anne- I was just curious, do you have a very mild form of PKU (possibly Hyperphe)? I was just wondering. nBreanna 16 CPKU

    #6387
    Avatar of anne
    annepku
    Member

    hi breanna it’s anne answer to your question i have CPKU like you

    #6392
    Avatar of Breanna
    BreaMarie91
    Member

    Oh okay, I was just wondering!

    #6561
    Avatar of Angel
    kalptaru
    Member

    Anne were you diagnosed at 18? I thought I’d ask as so many people have different PKU stories.

    #6582
    Avatar of GEORGANNE
    GEORGIE
    Member

    hello my name is georgannei’m 40 years old found out i had pku at 10 days old .
    but i did not know there was more then one kind i have bin off the diet for 26 years and i’m haveing some medical problums and i need to talk with some one so i can figer out what i need to do i live in florida and i’m looking for freinds to chat with about this i need more info cuase i did not know there were different kinds of pku please help me .i need freinds that have pku .
    thank you ,
    georganne

    #6585
    Avatar of amanda
    m_ajoy
    Member

    hi my name is amanda and i dont have pku but my boyfriend dose and i was wondering if any one can give me some information about it.

    #6600
    Avatar of
    Anonymous

    Amanda, my name is Amanda too but i have PKU. im 21 and was digaosed at 1 week old. i have a website about PKU check it out im pretty sure it could help u understand pku. its just to much to write out here rigth now. u can find my site at http://pkuersunited.squarespace.com i hope it helps you!

    #6690

    Hi Amanda, I went to the website but it’s no longer available. Is there another one. My son is 29 and has PKU. nJulie

    #6693
    Avatar of Breanna
    BreaMarie91
    Member

    Hey Julie, Amanda’s new site is http://pku.bravehost.com sorry to answer for you Amanda . nBre 16 CPKU

    #6700
    Avatar of
    Anonymous

    no prob brea its so cool to see other ppl talking about my site. it makes it all so worth it. when i get back to my home after the flood damamge is cleaned up im gonna add a few more pages and even one on MPKU!! i cant wait i love working on the site!!!

    #6895
    Avatar of Kerrie
    kerrie mac
    Member

    I have a question. I went to the top of the page to locate a clinic close to me. I tried to do a 50 mile radius and also a 100 mile and there was no results. What should I do? Do I really need one? Would i be able to get what I need by my dietitian or regular doctor.. I have been off my diet since I was 18. I’m trying to get back on my diet, so I can start to try to have a kid. I am waiting on a referral from my insurance company to see a Dietitian. I have a apt. with my new OBGYN on Feb. 12. I’ve been told that he is familiar with Pku, so I’m just winging it until then.Can somebody please help me. thanks Kerrie

    #6897
    Avatar of
    Anonymous

    i noticed that the clinic locator dosnet show alot of places and it would be best that u called around , its very important to have both a regular doctor or obgyn and ur pku medical staff. they work toghter to inusre that the phe levels in ur body arent toxic and help u plan for a healthy baby, its also important to remember that phe levles are higher in the uterus then they are anywere else so u need ur levels really low before conseption and during pregnacy, my clinc and staff recomend that there between 2-6 mg/dl 6 months prior to conception and all through out. thats why its a good idea to contact them now so they can help u find ur tolernace, plan food records and monitor ur blood levels so u have a happy and healthy baby!
    good luck and let me know how it works out!!

    #6900
    Avatar of Breanna
    BreaMarie91
    Member

    Try going to this link http://www.macpad.org/page.aspx?id=92187 There are 3 clinics in California listed on this page. I’m not sure how close they all are to you, but it lists all the clinics in the USA (or atleast I think that is all of them). nBre 16 CPKU

    #6903
    Avatar of Kerrie
    kerrie mac
    Member

    Thank you for all of your information. Should I try to get referred by my primary doctor or would I even need a referral? I will check out the web site Breanne gave me. Do you guys have your own dietitian or is it through your metabolic clinic. Through the clinic is that where I get the formula, cuz I’m not drinking any right now and I’m aware that I have to start. Thanks for your guys help. Breanna you are knowledgeable in Pku. I am amazed on how much you know. Me I’m a 30 year old and I don’t know Jack Crap! Thanks for your help.

Viewing 15 posts - 1 through 15 (of 76 total)
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