I have a 4 month old son who has PKU. We live in Alaska where there are limited resources available to us. For example, there is no actual PKU clinic located up here so our nutritionist and doctor fly up from the states 4 times a year to meet with us. I am looking to connect with others who have PKU or have family members with PKU, especially those in Alaska. I know that I have felt very disconnected and alone throughout this process so far so any encouragement, resources, suggestions are greatly appreciated.
My husband and I are also starting to look at what kind of food we will be making for our son once he starts eating solids and have discovered how expensive the medical low protein food is. Does anyone have any suggestions about how to get insurance companies to cover the low protein food?
We are trying to get as much information as we can. If we can get a group of people together to raise awareness maybe we can lobby the state to get the medical food covered.
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.
Thank you, Kathleen! I will definitely go to your facebook page. Do you still live in Anchorage? We are in the process of trying to find daycare for our baby. Did you ever have to put your child in daycare? Any suggestions on who would be good with a child with a restricted diet or suggestions on how to tell people about PKU so they take it seriously?
I am all about creating an Alaska PKU community. Maybe we can even try to get the law changed so that insurance has to cover the medical food.
I look forward to chatting with you more!
Yes, we still live in Anchorage. We did not put our daughter in daycare as a baby/toddler. I was fortunate enough to be able to stay home with her (and our older children) at that time.
I would suggest looking for a daycare provider that has been licensed. I'm thinking that a small in-home daycare provider would be better than a large daycare, but I don't know–never having done this.
The biggest thing would be to find someone who can understand what PKU is (generally), and the importance of following the diet strictly. It would be good also to find someone who can be matter-of-fact about the diet, not too sympathetic. As your son gets older, it helps to just talk about Yes and No foods. I think he'll grasp what he can and can't eat much more quickly than you'd think.