*Get a note from the doctor/dietician so that you can travel with your food and formula
*Make sure all accommodations offer a refrigerator, microwave or have an area that "allows" their staff to warm up your low protein food (some accommodations will not allow this due other allergies)
*Don't forget your scale, measuring cups and/or spoons and most importantly your low-protein book or app (now available on many smart/iphones)
*Disney: The phone number to call to make your dining reservations at Disney’s Table Service restaurants is: 407-939-3463. You need to indicate the special diet
requirement as PKU. Click on the link to see a sample menu as Cambrooke Foods have been working with Disney.
GETTING HEALTH INSURANCE COVERAGE FOR PKU CAN BE VERY DIFFICULT.
Health coverage varies depending on the state that you live in. It's important that you research the coverage benefits allowed in your state. Also, coverage depends on the type of insurance you have.
A state law is needed as under the FDA, these metabolic formula's are not considered a prescription. The insurance company may deem this formula a durable medical equipment and it may undergo review.
Something very important to consider is that if your insurance company is "self insured", it is NOT mandatory to follow state regulations and/or laws related to insurance. You can see the HR manager of your employer, union, etc and ask for a hearing and try to fight for coverage. If you need help with this, please contact us as we have personal experience with this sort of coverage.
For a complete list of state coverage for PKU, please check out the link: http://www.pkunews.org/rights/lobby6.htm
LOW PROTEIN FOOD LIST FOR PKU
The Low Protein Food List for PKU has been an indispensible resource for everyone involved in the treatment of phenylketonuria (PKU) since 1995. This third edition (2010) contains over 6,000 entries, the most extensive listing yet of foods that are potentially suitable for the diet, nearly double the number found in the previous edition. It includes many new foods found at health-oriented grocery stores, expanding choices for the diet.
The book provides information on phenylalanine (phe), protein, and calorie content of foods based on serving portions, both in common measures and gram weights, in an easily searchable format. The handy "mg phe/gm food" column allows users to compare phenylalanine density of foods and make appropriate food choices for individual diet needs. People using an "exchange" system for counting phe will find exchanges are calculated for each food portion as well. The front section of the book also contains valuable information and tips for managing the PKU diet.
Virginia E. Schuett is founder and director of National PKU News, a non-profit organization devoted to providing news and information to people living with or treating PKU since 1989 via a newsletter that is produced three times yearly. A nutritionist, she has been working with PKU-affected families since 1972. She is the author of Low Protein Cookery for PKU, Apples to Zucchini: A Collection of Favorite Low Protein Recipes (with co-author Dorothy Corry), You and PKU, and numerous articles and educational materials related to PKU.
HAVE YOU SEEN THE LATEST ADVANCEMENT TO THE PKU FOOD LIST? IT'S JUST A CLICK AWAY, LITERALLY. PKU NEWS HAS RECENTLY DEVELOPED AN ONLINE SITE JUST FOR YOU TO HAVE EASIER ACCESS TO YOUR FOOD LIST. THE COST TO THIS ONLINE SUBSCRIPTION IS $48 FOR THE YEAR, HOWEVER THE EASE OF USE IS AMAZING. VISIT http://www.howmuchphe.org/ TO LEARN MORE AND TO SUBSCRIBE.
To Help Support the PKU community, please click on the link below.
TOGETHER WE RAISE AWARENESS!!!
All donations to the PKU Helping Hands are tax deductible as allowed by law.
*DISCLAIMER: The information listed on the PKU Helping Hands, Inc. website is for educational and informational use only. This information is not intended, nor should be used as professional advice. In the event that you need to seek medical advice, please contact your clinic.