Community› The Bump Message Boards› Food Allergy
Food Allergy
New Discussion

pku

meganschneidermeganschneider member
in Food Allergy
My son who is one year today (yipee) has pku. I tried the special needs board but it doesn't seem like the right fit. If you don't know what PKU is phenylketonuria..basically my son will eat a low protein and vegan diet for the rest of his life. He takes a medical formula he will drink for the rest of his life. He can't ingest more than 150 mg of protein a day, yes less than 1 gram. I'm very limited in the foods he can eat. No milk, soy, animal products of any kind, no nuts, gluten or flour and especially no artificial sweeteners. He gets blood drawn once a week since he was 2 weeks to track his levels. Although this isn't an "allergy" his levels not being in the correct range would result in irreversible brain damage that would lead to mental retardation. There aren't a lot of PKU resources since it's a rare disorder. Hopefully I can chat with some of you mamas. Oh by the way I'm also pregnant with another boy..due at the end of this month...:-)
Report Reply to Post

Re: pku

  • kris_kelseykris_kelsey member
    My co-worker has 2 year old twins both with PKU... are you looking for resources or people to connect with?  I could check with her to see what she knows about.  I think she hasn't really connected with people either...
    Baby Birthday Ticker Ticker Baby Birthday Ticker Ticker
    Report Reply
  • Loading the player...
  • kerischraderkerischrader
    I had to look up what PKU was, I am so sorry you are having to go through this! And congrats on your new LO on the way!
    Lilypie - Personal pictureLilypie First Birthday tickers
    Report Reply
  • 92405bride92405bride

    imagekris_kelsey:
    My co-worker has 2 year old twins both with PKU... are you looking for resources or people to connect with?  I could check with her to see what she knows about.  I think she hasn't really connected with people either...

    My almost 2 yr old niece and nephew have PKU - and looking at your location, it's possible they are the same people that you know, because they live in the Twin Cities :)  She wrote a great post on her (very very rarely updated) blog about it here: https://bejogram.com/2012/01/31/so-you-wanna-know-more-about-pku/

    You may have already seen these, but here are some great websites with a ton of resources: https://www.pku.com/ 

    https://www.cookforlove.org/ 

    Most states have PKU foundations - I know MN has a fairly active one and their website might have links to other states as well: https://www.mnpku.org/ 

    Baby/life blog Food blog Baby Birthday Ticker Ticker Baby Birthday Ticker Ticker
    Report Reply
  • meganschneidermeganschneider member
    Thanks so much for the posts ladies!!! I would love to chat and connect with any parents that have kids with PKU. I live in Ohio too if anyone is curious :-). Thanks everyone and good luck with all your children. It's nice to have a place to talk to other people that understand what you're going through.
    Report Reply
This discussion has been closed.
Choose Another Board
Search Boards
"
"