A page for parents with a recent diagnosis, or anyone who has someone with PKU in their life.
Welcome to my blog! I am so happy you are here. As someone who has lived with PKU my whole life, I really want you to know that even though this can be a scary diagnosis, it will be ok! PKU is a very serious disease, but it is completely treatable! Count that as a great blessing.
Nothing I say can replace the professional opinion of your child’s doctor and dietitians. Certainly rely on them during this time.
The biggest things I would remember are:
1) Following the diet is of utmost importance. This requires commitment and a good deal of effort, but it is totally worth it and makes all the difference.
2) If your child follows the diet they can have a normal, healthy, happy, productive life. The support you give them as their family will shape them much more than the dietary limitations will.
I would like to share some things with you that may be helpful.
- Here is what my mom felt like when she found out I had PKU: Are You Sitting Down?
- Here is the National PKU Alliance‘s page for new parents: New Diagnosis
- Here is a wonderful, short video about living with PKU by Kevin Alexander: Tuxes for Tia
I hope you will enjoy looking around my blog. I have recipes, tips, resources, and thoughts about embracing PKU and all that it entails.
Please feel free to contact me if you would like to talk to someone who has lived with PKU: I love talking to people about this!