Section
1 | Section 2 | Section
3 | Section 4
2 T. oil
¼ tsp. dill weed
¼ tsp. garlic powder
¾ tsp. Hidden Valley Ranch Dressing Mix (dry)
6 oz. Ener-G Foods wheat-free pretzels
Combine first 4 ingredients. Pour over pretzels and toss. Let set 1 hour, stirring occasionally. Makes 3 servings.
Leucine Protein Calories
Per recipe: 147 mg 2.0 gm 550
Per serving: 49 mg 0.7 gm 183
Submitted by Elizabeth Stauffer
5 medium apples (600 gm peeled & diced)
¼ c. sugar
1 T. minute tapioca
1 T. red cinnamon candy hearts
¾ c. hot water
Combine ingredients and cook for 15 minutes or until tapioca is clear. Remove from heat and cool.
Leucine Protein Calories
Per recipe: 87 mg 1.6 gm 673
Submitted by Ruth Leid
50 gm wheat starch
50 gm cake flour (Soft-As-Silk)
2 tsp. baking powder
¼ tsp. cream of tartar
¼ tsp. salt
¾ tsp. sugar
2 T. softened butter
¼ c. water
Mix all ingredients and pour into a greased 8" round pan. Spread dough to cover the bottom of the pan. You may need to dust the dough with extra wheat starch to be able to pat down evenly. Cover with your favorite toppings. Bake at 375° for 20 minutes or until lightly browned. Makes 6 servings.
Leucine Protein Calories
Per recipe: 256 gm 4.3 gm 578
Per serving: 43 gm 0.7 gm 96
1 c. boiling water
2 T. margarine, melted
3 Whitehall Specialties processed sandwich slices (imitation cheese)*
½ tsp. salt
¼ tsp. garlic powder
¼ c. water
2-4 tsp. cornstarch
Combine boiling water, margarine and sandwich slices and blend until smooth. Pour into a saucepan and add salt and garlic powder. Bring to a boil. Combine ¼ cup water and cornstarch. Stir into cheese sauce and cook, stirring until slightly thickened. Makes 1⅔ cup sauce or 5-⅓ cup servings.
Leucine Protein Calories
Per recipe: 188 mg 2.3 gm 448
Per serving: 38 mg 0.5 gm 90
*Similar low protein “cheese slices” are available on the market. Be sure they list no more than 1 gm protein per slice.
1 c. cooked & shredded potatoes
⅓ c. cheese sauce
¼ tsp. salt
⅛ tsp. pepper
½ T. butter
¼ c. low protein bread crumbs
Combine potatoes, sauce, salt and pepper in a greased baking dish. Melt butter and add bread crumbs; saute until lightly browned. Sprinkle on potatoes. Bake 350° for 30 minutes. Makes 2 servings.
Leucine Protein Calories
Per recipe: 224 mg 3.4 gm 448
Per serving: 112 mg 1.7 gm 224
1-8 oz. container of Cool Whip, thawed
1 pint sorbet (desired flavor)
With a mixer whip Cool Whip and sorbet together. Freeze. Makes 8-½ cup servings.
Leucine Protein Calories
Per recipe: 432 mg 7.6 gm 1180
Per serving: 54 mg 1.0 gm 148
For Cambrooke Food’s regular monthly customers, Cambrooke’s Rewards Club offers convenience and an opportunity to give to the Metabolic community. Club members, who maintain a standard monthly order, (which can be altered as needed) will receive free samples as new products are introduced. At the end of a twelve month period of continuous enrollment (with a one month “vacation break” if needed), they will receive a credit of 5% of the total amount spent during that period toward future purchases. A check for the same 5% amount will be donated in their name to PKU News to support ongoing food product research. For details on Cambrooke’s Rewards Club, call: 866-4 LOW PRO (866-456-9776) ext. 6, or send an e-mail to: CambrookeClub@Cambrookefoods.com
Send Cambrooke Foods an original, great tasting recipe that uses three or more Cambrooke Foods products, and give permission for it to be posted on their web site. If they publish your recipe, you will receive a $10 Cambrooke Foods gift certificate. If yours is selected as the best recipe entry based on taste, the number of products used, and originality, you will receive a $100 Cambrooke Foods Gift Certificate. Deadline for recipe entries is May 30, 2003. They will announce the winner via e-mail in early June.
Lynn
of Cambrooke Foods Visit the Cambrooke web site to view their great products and recipes. You can mail, e-mail, or fax your orders to them at:
2 Central Street, Framingham, MA 01701. mykitchen@cambrookefoods.com
Fax: 630-839-7413
Msudfoodlist:
Keeping Track of the Foods You Eat is a pocket-sized (6" x 4"), spiral-bound,
comprehensive food list. This handy
booklet, designed especially for teens and adults with MSUD, was developed and
written by the nutrition section at Emory University, Division of Medical Genetics.
It can also serve as a quick reference for those caring for children with MSUD,
such as school teachers and babysitters.
The food list includes the serving size, weight, calories, grams of protein, leucine content, and number of exchanges for over 700 foods. Additional pages tell how to figure leucine exchanges and understand food labels. There are lists of free foods and foods to avoid and pages formatted for keeping a food log. (On the last page, under Resources, please update Joyce Brubacher’s area code, 574, and
e-mail address: msud-support@characterlink.net.)
Our sincere thanks to the United Service Foundation for their generous donation making the publishing of this booklet possible. Families and adults with MSUD who attended Symposium 2002 each received a free booklet. The MSUD Food List is now available for $10 per booklet. There is an order form on the MSUD web site: Click HERE f the order form.
Emory University—Medical Genetics
Nutrition Section
2040 Ridgewood Drive
Atlanta, GA 30322
☎ 404-727-2479 or Fax: 404-727-5783
Make checks payable to Emory University- Medical Genetics. If you cannot afford the $10 cost, check with your dietitian to see if your clinic will give you a booklet.
Mead Johnson publishes a calendar every year featuring babies or young children who drink Mead Johnson formulas. If your child drinks one of their MSUD formulas, you can have your child featured on the calendar. Just send a photograph of your child with this information written on the back: child's name and date of birth; parent’s name, address and phone number; and the name of the Mead Johnson special formula your child uses.
Mead Johnson accepts photographs anytime during the year, however, they will not be returned. Send your photo to:
Special Kids Calendar Coordinator
B202, Mead Johnson Nutritionals
2400 West Lloyd Expressway
Evansville, IN 47721-0001.
For more information contact Tracy Beckman at 502-254-1577 or check the web site: twhyte@aol.com.
These calendars are available free from metabolic clinics. Ask your doctor or dietitian for a calendar if you did not get one this year.
Nutritionist Phyllis Acosta at Ross Products cautions against heating metabolic formulas (medical foods) in the microwave. They lose nutrients if heated above 100° Fahrenheit and there can be a variability in the temperature of the mixture. Some areas may be hot enough to burn the child. It is better to heat water in the microwave and then warm the container of formula in the pan of heated water. Or place the container in a pan of cold water on the stove and heat the formula to room temperature. All formula mixtures should be shaken after heating and tested on the inside of the wrist to make sure the mixture is not above room temperature.
NEWBORN SCREENING—YOUR HELP NEEDED!
In early November 2002, I traveled to Phoenix, Arizona for the Association of Public Health Laboratories (APHL) annual meeting. I was asked to speak as a representative of the National Coalition for PKU and Allied Disorders on the topic, "Parents Perspective on Ethical Issues in Newborn Screening."
I pondered how to obtain information for this presentation and eventually decided the best way to get a parent’s perspective on this issue is to ask them. I prepared a questionnaire and sent it to many different metabolic eGroups. The questionnaire asked for a response to five newborn screening questions. (My thanks to those from the MSUD eGroup that responded.) Jordan, my 13 year old son with MSUD, put together a Power Point presentation for me. It included the responses to my questions from parents from all over the country.
I presented this information to a large group of state laboratory directors, technicians, nurses, and genetic counselors at the APHL meeting in Phoenix. The audience seemed very interested in the parent’s views and feelings on newborn screening issues. To my surprise, after my presentation, several state lab directors approached me and asked how they could get more parent involvement in newborn screening in their state. I heard comments like: "It would only take a few vocal parents to get newborn screening moving forward in my state." and "Legislators in my state would take an interest in newborn screening if more parents contacted them and told their story."
This is my plea. Get involved in newborn screening in your state. It can be as simple as making a phone call. I would suggest getting started by calling your state health department and asking to speak to the Public Health Laboratory Director. Following are suggested questions to ask:
• How many diseases are we currently screening for in this state?
• What are they? And is MSUD one of them?
• Do we have a tandem mass spectrometer? (A machine capable of screening for a battery of disorders from one bloodspot.)
• If not, are there plans to purchase this equipment in the near future?
• If so, are we currently using this equipment?
• What are the plans for expanding our program to add more diseases?
• What can we do to ensure that all babies born in our state get comprehensive screening until the state is capable of providing this service?
• What can I do to move newborn screening forward in our state?
If you have any questions, feel free to call or e-mail me anytime.
Sandy Bulcher
740-548-4475
Section 1 | Section 2 | Section 3 | Section 4