Illinois Clinic Information Click here to get address, phone numbers and clinic staff information for all Illinois PKU & AHD Clinics.

Clinics

CHM Diet Record Forms: Excel | Word

My PKU Binder

My PKU Binder is a comprehensive manual on effectively managing PKU on a daily basis. These materials include the newest and best thinking on PKU and offer hundreds of tips, advice and what to expect from birth to adulthood both practically and emotionally. The National PKU Alliance hopes My PKU Binder will help you understand more about PKU, what to expect at different stages in life, and where to turn for support and help. The NPKUA would like to thank the following companies and people for their generosity and expertise on this project. Without their support, the PKU Binder would not have been possible:

• BioMarin Pharmaceuticals — for supporting My PKU Binder with an educational grant
• Applied Nutrition — for use of My PKU Toolkit A Transition Guide to Adult PKU Management. New Jersey: Applied Nutrition Corp. 2007 in several of the chapters
• Australian Society for Inborn Errors of Metabolism — for use of their PKU Handbook in several of the chapters
• Children’s Memorial Hospital Chicago — for their edits, contributions and medical review of the information in the handbook

Click the image above or here for the full Binder (8MB). To get chapter by chapter downloads click this link to visit the NPKUA website.

Virginia Schutte's 3rd Edition Low Protein Food List for PKU is now available! Click here to order directly from her site. For information on the book and a bit more information click learn more.

Learn more…

Traveling & Vacations can be fun for the whole family but traveling with a restricted diet can be a bit frightening. Here are a few tips from our family to yours for your next trip. Be sure to ge a letter from your doctor or dietian to carry at least some formula and/ or food on board with you. You can never can be too careful, in the event you your luggage doesn't make it with you. Bring extra low protien snacks with you. Traveling to Disney? Disney theme parks provide a wide variety of Low Protien Foods to help make your stay more enjoyable.....Learn More   Count exchanges? (15mg Phe=1exchange) Here is an easy way to teach your kids how to hit their target everyday and to learn exchange counts of foods. Tape two dixey cups together, lable one cup in and the other out. Fill the "in" cup with skittles per the number of exchanges consumed a day (i.e 20 exchanges/ skittles). In the morning all the skittles should be in the "in" cup. As your child eats exchanges, skittles should move over from 'in" to "out" one by one. I.e. 2 slices of LP bread= 2ex. The trick is to move all over by the end of the day, gradually. For hitting the target, eating the skittles can be the reward. Information for Teachers & Babysitters Below are two documents you can give to your childs teached or babysitter. Teacher   Babysiter

Be on the Lookout: PKU Parents

	We have all seen this symbol on Diet drinks and some gums, but recently gum companies are not displaying this. Be on the lookout for " Aspartame" or " phenylketonurics, contains phenylalanine" Some products that have phe in them that are somewhat recent changes are Big League chew and Alka-Seltzer cold. Be sure to check all the gum your child chews.

Doug Hart is the PKU & AHD contact at IDPH. Contact Doug regarding your pin number to order. You will need to provide Doug the patients name and birthdate. Order forms are below, they can be mailed or faxed. Doug can be reached at (217) 557-5395. Orders are placed on Monday. If formula is in stock, orders recieved by Monday will arrive by Friday. 2011 forms are now up- including Better Milk!

PKU Order form

AHD Order form

For more information about IDPH:

www.idph.state.il.us

Check out the links below for low protein food sites, support and resources. Be sure to come to our annual meeting where we always have vendors available to try new PKU foods and formulas.

How to join:

Additional Information

Here are some downloadable reference pages that provide good information for friends, teachers and family.

Weblinks download listing

Diet Low Protein Websites download listing