PKU.com Community Discussion Forum New to PKU.com PKU mother in Alaska Reply To: PKU mother in Alaska

#8961
Avatar of Kathleen
AKmom17
Member

Hello!
I'm the mother of a 17-year-old daughter with PKU.  She was born in Anchorage.

The diet can seem overwhelming at first, but it is workable.  When my daughter was little, we referred to Yes foods and No foods.  She became very good, at a pretty early age, at knowing what she could and couldn't eat.

I've experienced the challenges of parenting a child with PKU in Alaska.  I just created a Facebook group, Alaska PKU Support Group, to do some of the things I've wanted to do for a long time.  My goal is to create an Alaska PKU community, to help address some of the additional challenges we face here.  One of my goals is to work together to find ways to reduce formula and low protein food costs.

RE: low protein food.  We haven't been able to have low protein food covered by insurance.  I guess  they figure you have to buy food anyway.  I generally only order the basics, because of the expense:  low protein pasta, baking mix, and cereal.

There are some challenges to baking with the baking mix, as it contains no gluten.  The gluten is the part of the grain that contains the protein (from my understanding, anyway).  It's also the part of the grain that helps to make whatever you're baking stick together.  However, I've learned some tricks to make baking easier, and I'd be happy to share them.

I would be happy to offer any support I can.

Best wishes,

Kathleen

Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional