Emergency Guide

Have you ever thought about what you would do about your child's diet if something happened to you? If an emergency situation arose that took you away from the home for a period of time? If you weren't able to prepare the meals? Who would step in and be able to follow the diet until you were able? This situation may arise and you should be prepared. We have developed a simple guide for you to follow to inform those who may be dealing with the unfamiliar diet and formula preparation.

The most effective use of this information would be for all those who may be involved with this to have an updated copy. Those persons may include relatives, friends or neighbors.

The following information could be included:

1. Child's name
2. Date of Birth
3. Any identifying marks ie: birthmarks, moles, scars, eye color, etc.
4. Dr. responsible for PKU care- including name of Dr and phone #
5. Dr. responsible for overall health care (may be different from PKU Dr.)-including name and phone #
6. Dietician  responsible for PKU management- name and phone #
7. Type of formula. How is it prepared? Daily amount, special tips including any special cup or flavoring. Who supplies the formula? Include phone #.
8. Diet- phe amount/day, favorite foods, where foods can be ordered, foods allowed and not allowed, snacks and treats. Include a typical meal plan including amounts of each food ie: 1/2 cup of Rice Krispies, 1/2 cup blueberries, etc. Include packed lunch meal plans or school cafeteria contact person. Remember the phone #!
9. Scale- how to turn on, zero out and how to measure.
10. Is there anyone nearby who may be able to help out? I have a PKU mom living about 15mins away that I list as a resource person.
11. Blood spots- where supplies are located, how often do you test, what body part is used for testing, does the child help out? What to put on the card, where to mail it and how much postage is needed. 

This is not meant to be an all inclusive list and anything that may apply to your specific needs should be added.

Above all- remember to contact the clinic, or have the person taking over do this asap in order to  provide guidance and support during this stressful time. They should be aware of this difficult situation and would be happy to help wherever they are able.