The questions and responses below are generated from inquiries to the UW PKU Clinic website.
Where can I get information for a project?
Can I use information from your site for my project?
My child was just diagnosed with PKU. Where can I get information?
Why does one child have PKU while his brother doesn't?
Where can I buy Nucoa margarine?
I think I am allergic to aspartame. What should I do?
Question: I am doing an assignment on PKU and would like more information about PKU. What kind of research is being done?
Answer: The most valuable resource for you is the National PKU News website (http://pkunews.org). On this website, the sections, "For Students Writing Papers" and "PKU Research" should be very helpful.
Question: I am doing a project on PKU and would like to use information from your website. How should I request permission?
Answer: If you use materials from the University of Washington PKU Clinic website for your project, please give us credit for the material. For example, "From the University of Washington PKU Clinic website: http://depts.washington.edu/pku."
Question: My newborn was just diagnosed with PKU. Where can I get information about food lists, food suppliers, and menus?
Answer: Once you receive the information that your child has phenylketonuria, there is a lot to learn about PKU and its management. However, keep in mind that you do not necessarily need all of the information at one time. Learning to know your infant and how your infant responds to treatment will take time.
There are, however, many resources available to you. The most important resource to you and your family is the PKU Clinic in your area. Developing a solid and supportive working relationship with your PKU Clinic is one of the most important first steps.
Our website has a "New Parents' Guide to PKU" which is well-received by parents new to PKU. We also post recipes and helpful hints for treatment on a regular basis. The other singlemost helpful resource for you and your child is a subscription to the National PKU News. The website is http://pkunews.org. The National PKU News website will tell you how to order the other important tools that you will need--the Low Protein Food List, the Low Protein Cookbook, etc--as well as provide contact information for many of the companies that distribute low protein foods.
Question: My friend has two children. The newborn was just diagnosed with PKU. I was reading about the disorder and found out that it is genetic. Her oldest son doesn't have PKU. Why is that?
Answer: You are correct, phenylketonuria is an inherited genetic disorder. It is inherited in an autosomal recessive fashion which means that each parent must be a carrier of the disorder for the child to inherit it. Each parent is a "carrier" which means that each parent has two copies of a specific gene, and one copy is working and one is not. A child inherits one copy of each gene from each parent and must receive two copies (one copy from each parent) of the non-working gene to have phenylketonuria.
Children of the same parents may be "carriers" like their parents and have one working copy and one non-working copy of the gene. Or they may inherit a working copy of the gene from each parent. Or they may inherit a non-working copy of the gene from each parent and thus have PKU.
Thus, the older child may be a carrier or may be not. Subsequent pregnancies will have the same "risk," that is, a 50% chance of having a child who is a carrier, a 25% risk of having a child who is not a carrier, and a 25% risk of having another child with PKU.
For a diagram
illustrating recessive inheritance that you may find helpful, follow this
link:
Recessive
Inheritance Diagram.
Families of children with PKU may also find it helpful to speak with a genetic counselor. Find one in your area by searching by specialty, city, or zip code on the following website: http://www.nsgc.org.
Question: Where can I buy Nucoa margarine?
Answer: Nucoa is the brand name of a margarine that does not contain any milk solids and is thus free of protein and phenylalanine. It is a lactose-free, cholesterol-free margarine that is distributed by GFA Brands, Inc., Cresskill, NJ and is available at most large grocery stores. I do not believe that Nucoa has a website. On the other hand, any margarine that does not contain any milk solids would be free of phenylalanine and appropriate to use.
Question: I think I may have an allergy to aspartame. Since aspartame contains phenylalanine, should I avoid foods with phenylalanine?
Answer: Allergies can be a complex diagnostic process. You should check with a respected allergist to discuss your concerns and work out a plan for testing for allergies, if that is deemed necessary.
Aspartame is a compound that includes phenylalanine as one ingredient. Individuals who limit (or avoid) aspartame need not limit phenylalanine from other sources. Other foods that contain large amounts of phenylalanine are all of the high protein foods (meat, poultry, fish, eggs, dairy products, and legumes). So, if you are eating a "standard" protein diet, you have significant phenylalanine intake each day. For people who do not have phenylketonuria, a low phenylalanine (and thus low protein) diet can be harmful. We suggest that you consult with your primary care provider for more information.
| PDF
documents preceded by this icon require Adobe Acrobat Reader for viewing
or printing. Acrobat is available free of charge from the Adobe Web
site at http://www.adobe.com/prodindex/acrobat/readstep.html
|