Relativly new

Relativly new

Avatar of Kelly

Relativly new

October 9, 2010 in Uncategorized

Hi Everyone- I am relativly new to this site. I have been lurking for months but haven't really put myself out there yet. Anyway I am a monther of 2. My youngest (my son) was dianosed with pku at birth. It has been an emotional roller coaster the past year learning and dealing with this disorder. He is turning 1 the end of this month and it's getting ALOT more difficult now that he is eating more table foods. We are in the proccess of getting approved with our insurance to start ordering foods from cambrooke. In the meantime I really want to start connecting with more people and especially other moms with little ones to relate and get advice from. Any advice and tips for just starting out with table foods would be greatly appriciated. Thanks everyone!

6 Reviews of Relativly new

  1. Registered: Jul 22, 2010

    Posts: 0

    independence, Missouri

    Hello, I am new to the PKU world also. My son is 9 months old and was diagnosed at 10 days of age. Things are quite overwhelming but this site has helped me out a lot. Thanks for asking this question, i will be paying attention to your responses. What in particular are you ordering from Cambrooke? Table food is right around the corner for my little guy.

  2. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Hi, welcome to the site! I can’t speak as a parent, but I can speak as a 25 year old (almost 26) that has been living with PKU since I was born. Yes, PKU is stressful and you are so worried about having a healthy child and doing everything right. I can assure you that your child can live a happy and successful life. I am not the only adult with PKU on here that can say that. PKU can be a challenge and like you say a “roller coaster” but coming on here and networking with other parents is the best way to cope with it :) anything you need on my end, please do not hesitate to ask!

    Katie, NY

  3. Registered: Oct 9, 2010

    Posts: 0

    BELLEVILLE, Ontario


  4. Registered: Sep 12, 2006

    Posts: 0

    Franklin, Wisconsin

    First of all happy early birthday to your little one :). I can’t offer much help from a parents perspective, but as someone who has been living with PKU for nineteen years I would love to help in anyway that I can. Hopefully your son’s clinic is doing a good job of offering advice on table foods, but I am sure there are a lot of parents here who would love to help as well. I think sometimes other parents can even offer tips that doctors and dietitians don’t even think of.
    Take care and feel free to send me a message anytime,
    Breanna 19 CPKU

  5. Registered: Jan 12, 2010

    Posts: 0

    Turnersville, New Jersey

    Thanks Everyone! we are in the process of getting approved through our insurance to start ordering foods through cambrook. I imagine that will make our life a little easier once we can start doing that. I always feel like with the foods I am giving him now (vegetables and fruits) it’s not always enough. I know if I eat just fruit or vegatables I’m still hungry until I have some carbs. Thanks for the support I definetly want to try to utilize this site a lot more.

  6. Registered: Oct 31, 2006

    Posts: 0

    Taylor, Michigan


    i saw your blog on pku .com and i know that it is hard i was diagnosed with pku when i was 2 weeks old anf what i wanted to tell you is that it is hard to balance when you are on regular food . I normaly eat what i want i just stay off the things that i can not have i eat no meats no dairy on a daily basis. There are pleant of alternitives that you can try . like pasta i eat regular pasta . but i just watch how much that i eat , i eat pku food from cambrooks , but they can be expensive . i eat a lot of potatos . but it is they way that you make them and what you put with them . I eat alot of rice and mix it with some soup . cream of mushroom soup . there are so many things that are out there that you can buy in a store to that you can buy . I could be here all night and tell you some things that have to make myself. The best way is to experment in the kitchen . i would love to talk to you more if you would like to at i would love to talk to you if you have any questions … i have been wanting to find somebody to talk to about pku and i read your blog . put in subject PKU


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