Wednesday, July 25, 2007

A PKU Blog for PKU Families

Our baby Owen was diagnosed with PKU July 20, 2007. It was a very stressful time, but we have been helped by so many wonderful people. We are starting this blog to have a place for PKU families to share your stories, research and recipes. If you would like to become a contributing author and post your story or information about current research, leave your email address in the comments, and you will receive an email invitation.

If you would like to contribute any recipes you have tried, I am going to begin organizing them in the link you can see on the right "RECIPES". Click on the link, and once I receive recipes, they will be organized by category. Please send recipes to heidisrecipes@hotmail.com, and include any comments about the recipe, your first name and how you have been affected by PKU, and the nutritional information of your recipe (if available). Eventually, I am hoping that this site will be a great resource for all of us. Thank you for your contributions.

27 comments:

The Crisps said...

I love the whole blog world and this blog is a great thing for pku families cant wait to here about everyones experiences. my son is 14 months with classic pku! Things are great with him and i could have asked for a healthier little boy. As tramatic as it seems in the begining its really not that bad. I just worry about the emotional side of things as he gets older, but we just take it one day at a time!
-natalie az

The Crisps said...

hello there! well I will pass this blog along to some other people. Well actually the baby stage for me was quite easy. they can eat lots of normal baby foods and the puffs are great. As for low pro foods, the porridge is good to get because its so low in phe. the bagels were good for teething and on the run, its something that will take them a a while to eat. Get the PKU cookery book if you dont already have it. could you give me access to post pics. Where are you from? baby center has a great bulletin if you want to look there. its very resourceful. see yah

Anonymous said...

I enjoyed finding this blog. My son was just diagnosed with pku, and I have felt comforted that I can find others on the web with the same journey.

Anonymous said...

Great site. A while back I started a PkuWiki, I am trying to promote it as a user updated place for all information and news on pku

Anonymous said...

Sorry, The site is pkuwiki.com

Kaitlin said...

Hi, i'm a student at Oregon State University and for my medical anthropology class i'm doing a project on PKU. I was wondering if anyone would be willing to share some information with me about the disease and maybe some personal stories or hardships they've gone through? Any help would be much appreciated, so thanks!!!

Sandra Brothers said...

Hi I'm Sandra. I'm 23 and was diagnosed at birth with classical PKU. I have been on and off my diet in my younger years, but decided to stay on a couple years ago. One time the hospital sent my high phe formula bu accident, and my levels shot up to 38.6! OUCH! I was at work and didn't know why this was happening to me. I had to resign from work and havent worked since. I now have been without supplement for 8 months, because I cant afford it, and I have developed a severe stomach condition where I cant eat anything, and I cant work because I would be sick all the time. I stay on my diet, but it is almost not worth it while I don't have my supplement. Medicaid and disability, and SSI turned me down many times because I am not blind. The only things I am allowed to eat is fruit, because my levels have been so high in the past. Without my supplement, my doctor says to eat some chicken or something so I don't die. Currently, I recieve e mails from all kinds of PKU's going through this same thing if not worse.

Sophie said...

My friend Jenny (who has a daughter with PKU) and I are running a half marathon in Big Sur on Novemeber 15th and raise money for PKU research so if anyone wants to support us please check out our fund raise websites http://www.firstgiving.com/sophiebaal1 and http://www.firstgiving.com/teamjana we raised of $1500 so far to use for research projects for PKU. God bless all of you and your families ;-)

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