National PKU News Issue

Title

Author/ Publisher & Other Information

Approx. Price
(when available)

SS 1997, V9,1

Accomodating Children with Special Dietary Needs in the School Nutrition Program (Guidance for School Food Service Staff) (May 1995 brochure)

Food and Consumer Service, 3101 Park Center Dr, Alexandria, VA 22320

SS 1989, V1,1

K

All About PKU (coloring book)

Melanie Hunt, M.S., R.D. Children's Hospital Research Fund, Elland and Bethesda Ave, Cincinnati, OH 45229

$1.00

F 1997, V9,2

Always an Angel (1997) (a mother's story about her late-treated daughter)

by Leigh Murphy, GC & Co. Publishing, 3504 Aughton Ct, Orlando, FL 32812

$10.60 +$2.50 S/H

SS 2001, V13,1

Bryan Pearce: The Artist and his Work (art and biography of untreated PKU adult from Cornwall, England)

by Janet Axten. To order, e-mail orders@plymbridge.com (accepts major credit or debit cards).

40 pound sterling (about $60 U.S.)

SS 1996, V8,1

Bulletin in Spanish from the European Society for PKU (ESPKU), various

National PKU News, 6869 Woodlawn Ave NE #116, Seattle, WA 98115-5469

SS 1990, V2,1

K

Busy Bear's Refrigerator (1985)

by Harriet Margolin, Grosset and Dunlap

W 1992, V3,3

K

Can Piaget Cook? (1984)

by Mary Anne Christenberry and Barbara Stevens, Humanics Limited, Atlanta GA

F 1992, V4,2

Changing with Families (1976)

by R. Bandler, J. Grinder, and V. Satir, Science and Behavior Books, P.O. Box 1147, Palo Alto, CA 94306

SS 1989, V1,1

K

by L. Barr and C. Trahms, National MCH Clearinghouse, 38th and R Streets NW, Washington, DC 20057

W 1992, V3,3

Child of Mine: Feeding with Love & Good Sense (1983)

by E. Satter, Bull Publishing Co.

SS 1993, V5,1

The Child Who Never Grew (2nd Edition, 1992) The Nobel prize winning author tells the story of Carol, her daughter with PKU.

by Pearl S. Buck, Woodbine House, 6510 Bells Mill Rd, Bethesda, MD 20817. Tel: (800) 843-7323

W 1990, V1,3

The Child with PKU

Lois Castiglioni, RD, PKU Section, Child Development Division C19, Dept of Pediatrics, UTMB, Galveston, TX 77550

$5.00

SS 1989, V1,1

K

A Cloud Over Clarence (1979)

by Marc Brown, E.P. Dutton

F 1989, V1,2

K

Cloudy with a Chance of Meatballs (1978)

by Judi Barrett, McMillan Publishing Co.

F 1997, V9,2

Cocinemos con Pocas Proteinas (1997)

C. Curutchet, A. Contreras & A. Antonacci, Spanish PKU Cookbook. Echeverria 2210 50B (1428), Buenos Aires, Argentina, Tel and Fax: 54 1 784-8446, E-Mail: info@alltronsa.com

$15 US Includes S/H, Send USD$, Cash Only

SS 1992, V4,1

K

Cooking Wizardy for Kids (1990)

by Margaret Kenda & Phyllis S. Williams, Barron's Educational Series Hauppauge, NY

F 1994, V6,2

Correcting the Code: Inventing the Genetic Cure for the Human Body (1994)

Larry Thompson

W 1993, V4,3

CPN Clearinghouse Publication List

Children's PKU Network, 1520 State St, Suite 240, San Diego, CA 92111 Tel: (619) 233-3202 FAX: (619) 233-0838, E-mail: pkunetwork@aol.com

1st - Free, Addtl - $2

F 1999, V11,2

K

Creative Family Cooking: Recipes and Menu Planning for PKU (1999)

by the Mid-Atlantic Connection for PKU & Allied Disorders. Cookbook with over 125 recipes. Order through the MACPAD web site or send check payable to MACPAD Cookbook to: Laura Johnstone Urban, PO Box 6086, Lancaster, PA 17607.

F 1990, V2,2

K

Daddy Makes the Best Spaghetti (1986)

by Anna Grossnickle Hines

W 1997, V8,3

K

Denny the Dragon and his Magic Milk (1997) (35-page PKU coloring book)

Children's PKU Network 1520 State St, Suite 240, San Diego, CA 92101 Tel: (619) 233-3202, FAX: (619) 233-0838, E-mail: pkunetwork@aol.com

Free

SS 1990, V2,1

Diet Intervention for the Late-treated Adult with PKU (1990)

by S. Yanicelli, et al. IMD Clinic, Univ of Colorado Health Sciences Center, Campus Box C233, 4200 E 9th Ave, Denver, CO 80262

Free

F 1994, V6,2

K

Don't Feed the Monster on Tuesday

by Dr. Adolph Moser, Landmark Editions, PO Box 4469 Kansas City, MO 64127

W 1991, V2,1

K

A Drop of Blood (1989)

by Paul Showers, Harper & Rowe

F 1997, W 1998, W 2001

Eat Right Stay Bright (1997-2001) (guide for professionals only)

by L. Bernstein, et al. Distributed by SHS North America. Tel: (800) 365-7354

W 1992, V3,3

K

Eating the Alphabet: Fruits and Vegetables from A to Z (1989)

by L. Ehlert, Harcourt Brace Janovich

F 1992, V4,2

Education of Students with PKU: Information for Teachers, Adminstrators, & Other School Personnel

See newsletter F 1992 for ordering info. (Depends on region)

SS 1989, V1,1

K

Ethan and Elizabeth Have PKU... And So Do You. (Videotape for ages 3 - 9)

by Sandra Shirley Messer, M.S., R.N., 2809 Knollside Lane, Vienna, VA 22180

$34 Families, $49 Organizations

F 1991, V3,2

Feeding with Love and Good Sense (Videotape)

by E. Satter Bull Publishing Company, PO Box 208, Dept C2, Palo Alto, CA 94302. Tel: (415) 322-2855

4 Tapes, $49.50/Tape, $149.95/Set

W 1992, V3,3

K

Frog and Toad Together (1972)

by Arnold Lobel, Harper and Row

SS 1999, V11,1

K

From Our Kitchen to Yours (1999) Cookbook with 82 original recipes

by PKU Organization of Wisconsin, 3523 W. Rawson Ave., Franklin, WI 53132.

$10. Check payable to PKU Organization of Wisconsin

W 1995, V6,3

K

Fruit (1989) (Illustrations & transparencies show how fruit grows)

by Gallimard Jeunesse and Pascale de Bourgoing "First Discovery Books" Scholastic, Inc, New York

SS 1989, V1,1

K

Games that Teach (1987) Geared to ages 2 - 6.

by C. Trahms, C. Cox and P. Luce, National MCH Warehouse, 38 and R. Streets NW, Washington, DC 20057

Free

W 1990, V1,3

K

The Giant Jam Sandwich (1972)

by John Vernon Lord, Houghton Mifflin, Boston.

W 1994, V5,3
F 1995, V7,2,
F 1996, V8,2

The Grand Boys: "All in Good Cause," "The Party's Only Starting," and "Organized Chaos." (audio tapes)

John Griffin, 81 Davidson St, Bannockburn, Scotland U.K. www.thegrandboys.co.uk
All proceeds benefit PKU research in the UK.

Tapes $12 each, US Travel Check or US Currency.

F 1989, V1,2

K

Gregory, the Terrible Eater (1980)

by Mitchell Sharmat, Scholastic, Inc.

W 2000, V11,3

Health Diary, PKU Program from PBS (2000). Includes interview with 3 PKU families

Dave Meier, Health Diary, 172 East Fourth St, St. Paul, MN 55101.

Send $17.95 check to Point2Point Communications. Ask for show #224.

F 1990, V2,2

K

The Healthy Habits Handbook (1983)

Slim Goodbody, Coward-McCann, Inc.

W 1990, V1,3

How to Get Your Child To Eat ... But Not Too Much (1987)

by Ellyn Satter, Bull Publishing Co.

SS 1992, V4,1

How to Talk so Kids Will Listen and Listen So Kids Will Talk (1980)

by A. Faber and E. Mazlish, Avon Books, New York, NY

F 1993, V5,2

International PKU Recipe Book (1992)

SHS North America, Tel: (800) 365-7354. Checks payable to SHS.

$23 US, $29 Canada

F 1997, V9, 2

Internet Listserve Group

Sign up by sending E-mail request to: macpku@aol.com

Free

W 1990, V1,3

K

A Journey Into the World of PKU (for adolescents) (1991)

by Kenneth W. Wessel, John Hopkins Hospital, Dept of Pediatrics Genetics, CMSC 1004, 600 N Wolfe St, Baltimore, MD 21205

SS 1990, V2,1

K

Kids Cooking, A Very Slightly Messy Manual (1987)

by Klutz Press, 2170 Staunton Ct, Palo Alto, CA 94306

SS 2001, V13,1

K

Kids, Parents and Power Struggles: Winning for a Lifetime (1987)

by Mary Kurcinka. (from bookstores and libraries)

SS 1991, V3,1

La Mujer Joven con PKU

PKU Section Child Development Div. C-19, Dept of Pediatrics, UTMB, Galveston, TX 77550

$5

W 1992,V3,3

K

Let's Eat (1975)

by G. Fujikawa, Grosset and Dunlap

K

Let’s Focus on PKU and Pregnancy (1999)

by L. Gleason and B. Goss (pamphlet for adolescents with PKU ages 11-15). Contact Barb Goss at 312-996-0995 or e-mail bgoss@uic.edu

W 1990, V1,3

Living with PKU (1995, revised)

Mead Johnson Nutritionals, Evansville, IN 47721 (obtain from local M.J. representatives)

Free

W 1992, V3,3

K

Louanne Pig in Making the Team (1985)

by Nancy Carlson, Puffin Books

F 1993, V5,2

Low Protein Bread Machine Baking for PKU (1997 revised)

by Virginia Schuett, SHS NorthAmerica. See order form.

$18 US plus shipping

F 1992, V4,2

Low Protein Cookery for PKU (3rd edition, 1997)

by Virgina Schuett, University of Wisconsin Press. Chicago Distribution Center, 11030 S. Langley Ave., Chicago, IL 60628. Tel: (800) 621-2736. See order form.

$29.95 US plus shipping

F 1999, V11,2

Low Protein Cuisine (1990)

by C. Lorimer, Cookbook with 36 recipes now available on the Internet at this web site.

free

W 2003, V14,2

Low Protein Food List for PKU (Second Edition, Dec. 2002)

by Virginia Schuett, SHS North America. See order form.

$50 US plus shipping

F 1989, V1,2

Making Up Your Mind About PKU And Pregnancy (1999)

by L. Gleason and B. Goss (pamphlet for women with PKU ages 16-22). Contact Barb Goss at (312) 996-0995 or e-mail bgoss@uic.edu

F 1989, V1,2

Maternal Hyperphenylalaninemia

PKU Clinic, St. Christopher's Hospital for Children, 2603 N 5th St. Philadelphia, PA 19133

1 copy - Free

W 1992, V3,3

Maternal PKU -- A Success Story (Videotape)

by Dr. A.G.F. Davidson, B.C. Children's Hospital, 4480 Oak St, Vancouver, B.C. Canada V6H 3V4. Check payable to: University of British Columbia

$25 US, $30 Canada (Add Postage)

SS 1996, V8,1

Maternal PKU: A New Crisis on the Horizon

by R. Koch, et al. Fanlight Productions, Order #LL-170, 1-88-937-4113. Tel: (617) 524-0980

$145, $50 Rental + $9 S/H

F 1989, V1,2

Maternal PKU: One Woman's Experience (Videotape)

PKU and Metabolic Clinic, Children's Memorial Hospital One Children's Plaza, Chicago, IL 60614.

$50

SS 1990, V2,1

A Message to PKU Parents (1990) (video tape)

For clinics, loan copy: Kathleen Velaquez, CDHS Genetic Disease Branch, Berkeley, CA 94704 Tel: (415) 540-3295 For parents: send blank video tape & self-addressed large envelope to: Mary Voss, 8914 Manzanita Dr, Alto Loma, CA 91701

F 1989, V1,2

Metabolic Currents: Maternal PKU

Phyllis Acosta, Dr. P.H., R.D. Ross Products 625 Cleveland Ave, Columbus, OH 43216. Tel: (800) 227-5767 FAX: (800) 614-3453

W 1990, V1,3

Metabolic Currents: Principles of Education for Patients with Inherited Diseases of Metabolism

Phyllis Acosta, Dr. P.H., R.D (see above)

1 copy - Free

W 2000, V11,3

K

My PKU Treat (1999). About a day in the life of a little boy with PKU.

by Breanna Hardy (PKU, age 8). PKU Organization of Wisconsin, PO Box 256, Franklin, WI 53132.

Check or money order for $6.00.

National PKU News (the newsletter!)

National PKU News, 6869 Woodlawn Ave NE #116, Seattle, WA 98115-5469. Tel: (206) 525-8140 FAX: (206) 525-5023

$18 US residents, $22 US for Canadians, $28 US for Foreign (drawn on a US bank or US currency)

SS 1990, V2,1

National Survey of Treatment Programs for PKU and Selected Other Inherited Metabolic Diseases

DHHS Public No. HRS-M-CH-89-5, National MCH Clearinghouse, 38th and R St NW, Washington, D.C. 20057

Free

W 1990, V1,3

New Parents' Guide to PKU

National MCH Clearinghouse (see above)

1 copy - Free

S/S 2000, V12,1

Now We're Cookin': Quick and Easy Recipes. 54-minute videotape with PKU parent/chef Diane Sullivan introducing recipes and tips for the low protein diet.

Produced by the University of CT Health Center and CT Children's Medical Center.

$10 from SHS at: 1-888-LOPROGO.

SS 1994, V6,1

Nutrient Content of Recipes from Low Protein Cookery for PKU, adapted for: 1. Homocystinuria, 2. MSUD, 3. Propionic/ Methyl-malonic Acidemia or 4. Tyrosinemia (1990) (Note: this is NOT the cookbook, only data from the cookbook's recipes)

National PKU News, 6869 Woodlawn Ave NE #116, Seattle, WA 98115-5469 (there are four publications; specify which you want)

$7.50 each publication

F 1997, V9,2

Nutrition Support Protocol for Previously Untreated Adults with Phenylketonuria (1997) (designed for use by nutritionists and professionals only)

P. Acosta Dr.PH, RD & S. Yanicelli MMSc, RD Ross Products Division, 625 Cleveland Ave, Columbus, OH 43125-1724. Tel: (800) 227-5767

Free

F 1997, V9,2

K

Oliver's Vegetables

by Vivian French, Orchard Books, New York

W 1990, V1,3

Parents Guide to the Child with PKU

Center for Family Services, 103 Sandels Building, Tallahassee, FL 32306

$8.00

W 2000, V11,3

The Path of the Son (1993). Biography of Bryan Pearce, (classical PKU, untreated, born in 1929), one of England's most acclaimed primitive artists for the past 40 years. Limited copies available.

by Ruth Jones. Orders c/o Abacus PCS Ltd, Bristol, UK. E-mail: sales@abacuspcs.com. Fax: 0-17614-11445 (For US orders, dial 011 44 1761 411445).

£16 (about $25 US). MasterCard or Visa only accepted.

F 1992, V4,2

Peoplemaking (1974)

by V. Satir, Science and Behavior Books, P.O. Box 1147, Palo Alto, CA 94306

F 1992, V4,2

K

Peter Rabbit's Natural Food Cookbook (1977)

by Arnold Dobrin and Fredrick Wayne, New You Publishing

W 1993, V4,3

Phe for Three: A System for Tracking 1, 2, and 3 Equivalents

by J. Evans, A. Prince, K. Huntington. Nutrition Services CDRC-OHSU, P.O. Box 574, Portland, OR 97207-0574

$17.50

F 1999, V11,2

Phe for Three: A food reference guide for PKU and other protein restricted metabolic disorders. (in English or Spanish)

by J. Evans, A. Prince and K. Huntington, Oregon Health Sciences University. Send check or money order to Nutritional Therapy/CDRC, PO Box 574, Portland, OR 97207.

$21.50 USD payable to CDRC/Phe for Three

F 1989, V1,2

Phe Forum (newsletter)

California Maternal PKU Project, Genetic Diseases Branch, California Dept. of Health Services, 2151 Berkeley Way, Berkeley, CA 94704

SS 1992, V4,1

Pick up Your Socks ... and Other Skills Growing Children Need (1990)

by E. Crary, Parenting Press, Seattle, WA.

F 1989, V1,2

PKU and Pregnancy

Genetic Metabolic Disease Program, Dept of Pediatrics, The Hospital for Sick Children, 555 University Ave, Toronto, Ontario M5G 1X8, Canada

$3

F 1989, V1,2

PKU, Pregnancy and You

California Maternal PKU Project, Genetic Diseases Branch, California Dept. of Health Services, 2151 Berkeley Way, Berkeley, CA 94704

1 copy - Free

SS 1999, V11,1

Pretend Soup and Other Real Recipes: A Cookbook for Preschoolers and Up

by Molly Katzen and Ann Henderson, Tricycle Press, Berkeley, CA, 1994.

SS 1994, V6,1

Publications Translated by the "Grupo de Padres PKU," Argentina

by Alicia Antonacci. Request list: Grupo de Padres PKU, Echeverria 2210 5º B, (1428) Buenos Aires, Argentina, Tel/Fax: 00 54 11 4784-8446. E-Mail: pku@netizen.com.ar

$2 +S/H

F 1992, V4,2

Raising Self-Reliant Children in a Self Indulgent World: Seven Building Blocks for Developing Capable Young People (1989)

Glenn, H.S. and Nelson J., Prima Publishing and Communicating, Rockin, CA

F 2002, V14,2

Really Living with PKU (15 minute video for new parents)

Children's PKU Network, 1-858-509-0767, E-Mail: pkunetwork@aol.com

$5

W 1997, V8, 3

Robert Guthrie - The PKU Story: Crusade Against Mental Retardation (1997)

by Jean Holt Koch, Hope Publishing House, PO Box 60008, Pasadena, CA 91116. Tel: (800) 326-2671, FAX: (818) 792-2121. E-Mail: hopepub@loop.com

$20 + $3 S/H

SS 1992, V4,1

Self Esteem: A Family Affair (1978)

by JI Clark, Winston Press.

F 1997, V9, 2

Special Children, Challenged Parents: The Struggles and Rewards of Raising a Child with a Disability (1997)

by Robert A. Naseef, PhD, Birch Lane Press, Carol Publishing Group, 120 Enterprise Ave, Secaucus, NJ 07094. Tel: (201) 866-0490, FAX: (201) 271-7894

$21.95 cloth

S/S 2000, V12,1

Sticks & Stones: 7 Ways Your Child Can Deal With Teasing, Conflict And Other Hard Times (2000)

by Scott Cooper, Random House.

W 2000, V11,3

A Teacher's Guide to PKU. Excellent summary of PKU and the diet for school teachers.

by Mimi Kaufman and Maria Nardella. Available at: www.tdh.state.tx.us/newborn/pku.htm.

SS 1991, V3,1

K

Three Days on River in a Red Canoe (1981)

by Vera B. Williams, Greenwillow Books, New York

SS 1991, V3,1

Un Menzaje a Padres a Ninos con PKU (Videotape)

Kathleen Velazquez, CDHS Genetic Disease Branch, Berkeley, CA 94704. Borrow, or for own copy send blank video tape & self addressed envelope to: Mary Voss, 8914 Manzanita Dr, Alta Loma, CA 91701

F 1989, V1,2

Understanding Maternal PKU

Children's Hospital, PKU Corps, 300 Longwood Ave, Boston, MA 02115. Tel: (617-735-6000)

1 copy - Free

W 1990, V1,3

K

Use Your Head, Dear (1983)

by Aliki Brandenburg, Greenwillow Books, NY

W 1993, V4,3

K

Vegetable Soup (1988)

by Jeanne Modesitt. Aladdin Books, New York

W 1995, V6,3

K

Vegetables in the Garden (1989)

by Gallimard Jeunesse and Pascale de Bourgoing, "First Discovery Books", Scholastic, Inc, New York

W 1992, V3,3

K

The Very Hungry Caterpillar

by Eric Carle, Scholastic, Inc.

SS 1989, V1,1

K

Why is Mary on a Diet? (1970's) Geared to ages 3 to 6.

Children's Memorial Hospital, PKU Clinic, 2300 Children's Plaza, Chicago, IL 60614

Free

F 1989, V1,2

Women with PKU

California Maternal PKU Project, Genetic Diseases Branch, California Dept. of Health Services, 2151 Berkeley Way, Berkeley, CA 94704

1 copy - Free

SS 1989, V1,1

K

You and PKU. (1981 and 1998) Geared to ages 3 to 8.

V. Schuett & M. Taylor, Second edition (1998), from SHS North America. See order form.

F 1989, V1,2 & SS 1993, V5,1

The Young Woman with PKU & The Young Woman with Mild Hyperphe

by Lois Castiglioni, RD, PKU SectionChild Development Division, C-19 Dept of Pediatrics, UTMB, Galveston, TX 77550.

$5

F 1989, V1,2

Your Diet for Maternal PKU

The Children's Hospital PKU Program, Gardner 650, 300 Longwood Ave, Boston, MA 02115

1 copy - Free

SS 1989, V1,1

K

Yummers! (1973)

by James Marshall, Houghton Mifflin