Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother's Story of Research and Recovery

Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother's Story of Research and Recovery

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by Karyn Seroussi
     
 

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When their nineteen-month-old son, Miles, was diagnosed with autism, Karyn Seroussi, a writer, and her husband, a scientist, fought back with the only weapons at their disposal: love and research. Consulting medical papers, surfacing the Web, and networking with other parents, they traced the onset of their child's problems to an immune system breakdown that… See more details below

Overview

When their nineteen-month-old son, Miles, was diagnosed with autism, Karyn Seroussi, a writer, and her husband, a scientist, fought back with the only weapons at their disposal: love and research. Consulting medical papers, surfacing the Web, and networking with other parents, they traced the onset of their child's problems to an immune system breakdown that coincided with his vaccinations. As a result, his digestive system was unable to break down certain proteins, which in turn led to abnormal brain development. So Karyn and her husband got to work -- Karyn implementing their program at home while her husband tested his theories at the scientific lab where he worked.

Unraveling the Mystery of Autism and Pervasive Developmental Disorder is an inspiring and suspenseful chronicle of how one couple empowered themselves to challenge the medical establishment that promised no hope -- and found a cure for their child.

Here are the explanations and treatments they so carefully researched and discovered, a wealth of crucial tools and hands-on information that can help other parents reverse the effects of autism and PDD, including step-by-step instructions for the removal of dairy and gluten from the diet, special recipes, and an explanation of the roles of the key players in autism research.

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Editorial Reviews

Publishers Weekly - Publisher's Weekly
What can be more devastating for parents than to learn that their child is autistic? The severely debilitating neurological disorder, which affects social and language development, can be difficult to treat. When her son was diagnosed with autism at 19 months, Seroussi, a small-business owner and wife of a research chemist, determined to do everything in her power to help her child achieve normal functioning. In addition to pursuing recommended speech and behavior modification therapies for her son, Seroussi devoted her considerable energies--often against medical advice--to researching alternative approaches. Her own experience and a growing body of scientific evidence pointed to connections between autism and diet. And though the theory has not yet been proven, Seroussi says, research now suggests that autism may be an autoimmune disorder triggered in rare cases by an infant's measles-mumps-rubella immunizations. Convinced that the inability to digest certain proteins was contributing to her son's condition and that his autism was related to his reaction to MMR vaccines, Seroussi eliminated suspect foods from his diet; he made such dramatic improvement that, by age four, he was functioning normally. Now a crusader for dietary intervention, Seroussi has written a book that will give hope to many families--though she cautions that not every autistic child responds to such treatment. She includes a FAQ section, gluten- and casein-free recipes and resources, and a list of organizations and readings. Agent, Kathi Paton. (Feb.) FYI: Seroussi is co-founder of ANDI (the Autism Network for Dietary Intervention) and co-editor of the ANDI News. Copyright 1999 Cahners Business Information.

Product Details

ISBN-13:
9780767907989
Publisher:
Potter/TenSpeed/Harmony
Publication date:
01/08/2002
Edition description:
1ST BROADW
Pages:
304
Product dimensions:
5.18(w) x 7.99(h) x 0.61(d)

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Appendix A

Cookbooks
Special Diets for Special Kids, by Lisa S. Lewis
This book is my favorite, and not just because Lisa gave me an acknowledgment in it! My dog-eared copy lives in my kitchen, where it has been spattered with oil, crumbs, honey, and cocoa powder as a testimony to its usefulness. It has the largest compilation of gluten-free, dairy-free recipes ever put together specifically for people on this diet.

The Gluten-Free Gourmet series, by Bette Hagman
The Complete Food Allergy Cookbook, by Marilyn Gioannini
Raising Your Child Without Milk, by Jane Zukin
The Yeast Connection Cookbook, by William Crook

Recommended Reading
Autism Treatment Guide, by Elizabeth K. Gerlach (see page 220)
Detecting Your Hidden Allergies, by William Crook
Is This Your Child? by Doris Rapp
The Four Pillars of Healing, by Leo Galland
Let Me Hear Your Voice, by Catherine Maurice
Digestive Wellness, by Elizabeth Lipski

Resources
Autism Network for Dietary Intervention
P.O. Box 17711
Rochester, NY 14617-0711
Fax: 609-737-8453
E-mail: AutismNDI@aol.com
Web site: www.AutismNDI.com

Founded by Lisa S. Lewis and Karyn Seroussi to provide support for families using dietary intervention in the treatment of autism and related disorders. The ANDI News is a quarterly newsletter containing recipes, research updates, and articles by parents and physicians. Cost of a calendar-year subscription is $20U.S., $26 International.

Celiac Sprue Association (CSA/USA)
P.O. Box 31700
Omaha, NE 68131-0700
Tel: 402-558-0600
Fax: 402-558-1347

CSA provides information and referral services for persons with celiac disease and dermatitis herpetiformis (a skin condition caused by gluten intolerance) and has published a series of low-cost brochures on gluten-free commercial foods and related topics. Their annual fall conference provides opportunities to present current information and research of celiac sprue and an exchange of approaches to coping with the gluten-free diet. CSA has an annual promotion during October, which is Celiac Sprue month, and one-day regional conferences during March.

CSA publishes a quarterly newsletter, Lifeline, at a subscription cost of $20 a year, that has many recipes for gluten-free foods, order forms for special products, and chapter and resource unit contacts. Send $8 for their comprehensive shopping guide of gluten-free foods.

Celiac Disease Foundation (CDF)
13251 Ventura Boulevard, Suite 3
Studio City, CA 91604-1838
Tel: 818-990-2354
Fax: 818-990-2379

The mission of the Celiac Disease Foundation is to provide services and support to persons with celiac disease and dermatitis herpetiformis, through programs of awareness, education, advocacy, and research. They distribute reliable up-to-date information about CD/DH and the gluten-free diet, seek to increase awareness of the condition among all health-care professionals, food and drug manufacturers, the food service industry, the media, and the public.

The Celiac Disease Foundation has local chapters and will assist persons who wish to start a support group in their area. They provide parent-to-parent matching through a group called Raising Our Celiac Kids (ROCK). They publish a quarterly newsletter, CDF Newsletter, that is included in membership fees, along with a brochure, Celiac Disease. They also have a bibliography of books and articles that are available to members including Guidelines for a Gluten-Free Lifestyle, Against the Grain: The Slightly Eccentric Guide to Living Well Without Gluten or Wheat, and The Gluten-Free Gourmet. They also have videotapes. Call or write for order forms and further information.

The foundation collects information on physicians and researchers who treat or study the condition and provide this information to their membership. They will provide information and referrals to other resources.

Celiac/Coeliac Wheat- and Gluten-Free Internet List
A listserv is simply a large e-mail discussion group, with all outgoing e-mail being sent to all members at once. It is a free service for Internet users. This is how I first got started as a gluten-free cook. The celiac list is a wonderful resource and the best way to get answers and opinions fast. If you find that corresponding on the list is taking up too much of your time, you can unsubscribe, or set your subscription to no mail until you are able to return. Although it is really a list for people with celiac disease, many parents of autistic children can be found there.

To subscribe, send a message to: listserv@maelstrom.stjohns.edu
In the body of the message type: Subscribe CELIAC Your Name
You will receive a letter explaining how to use the list.

St. John's also hosts a very large autism list, which includes several parents using diet and biological intervention.

To subscribe, send a message to: listserv@maelstrom.stjohns.edu
In the body of the message type: Subscribe AUTISM Your Name
You will receive a letter explaining how to use the list.

ARI (Autism Research Institute)
4182 Adams Avenue
San Diego, CA 92116

The ARI, founded and directed by Bernard Rimland, Ph.D., functions primarily to educate and support families of children with autism about current research, and about the various therapies available, including "alternative" therapies. For a small copying fee, they will send you packets of information on a variety of interventions. I highly recommend their quarterly newsletter, The Autism Research Review International, which reviews biomedical and educational research in the field of autism and related disorders. To subscribe in the United States, send $18; international subscriptions are $20 in U.S. funds.

You can write to the ARI for information on registration for the annual DAN! Conference. To order the DAN! Protocol, a physicians' biomedical diagnostics manual, send $25.

CAN (Cure Autism Now)
5225 Wilshire Boulevard, Suite 226
Los Angeles, CA 90036
Tel: 323-549-0500
E-mail: CAN@primenet.com
Web site: www.canfoundation.org

You may request a "parent pack," which includes the CAN Consensus Statement.

Marianne Toedtman, AGRE Family Recruiter
Tel: 888-AUTISM-2
E-mail: familyAGRE@aol.com
The Feingold Association of the United States
127 East Main Street, Suite 106
Riverhead, NY 11901
Tel: 516-369-9340

The Feingold Association of the United States is a nonprofit organization whose purposes are to support members in the implementation of the Feingold Program and to generate public awareness of the potential role of food and synthetic additives in the treatment of learning, behavior, and health problems. The program is based on a diet eliminating synthetic colors, synthetic flavors, and the preservatives BHA, BHT, and TBHQ. They have recently added a special section to their program introducing members to the gluten- and casein-free diet.

Developmental Delay Resources
4401 East West Highway
Suite 207
Bethesda, MD 20814
Tel: 301-652-2263
Web site: www.devdelay.org

The DDR is a not-for-profit organization whose mission is to educate parents and professionals supporting children with developmental delays about healthy options for treating the whole child. They publish a quarterly newsletter called New Developments, which includes articles about therapies, conferences, and nutrition, with lists of helpful organizations and mail-order for books.

The Great Plains Laboratory
9335 West 75th Street
Overland Park, KS 66204
Tel: 913-341-8949
Fax: 913-341-6207

Call for a urine collection kit if you are interested in testing for fungal metabolites — the waste products of gastrointestinal yeast — or to order a copy of Biological Treatments for Autism & PDD.

The National Vaccine Information Center (NVIC)
512 West Maple Avenue, Suite 206
Vienna, VA 22180
Tel: 703-938-DPT3
800-909-SHOT
Fax: 703-938-5768
E-mail: info@909shot.com
Web site: www.909shot.com

The National Vaccine Information Center is a national, nonprofit educational organization founded in 1982. It is the oldest and largest national organization advocating reformation of the mass vaccination system and is responsible for launching the vaccine safety movement in America in the early 1980s. Located in Vienna, Virginia, NVIC is dedicated to the prevention of vaccine injuries and deaths through public education. NVIC provides assistance to parents whose children have suffered vaccine reactions; promotes research to evaluate vaccine safety and effectiveness as well as to identify factors which place individuals at high risk for suffering vaccine reactions; and monitors vaccine research, development, policymaking and legislation. NVIC supports the right of citizens to exercise informed consent and make educated, independent vaccination decisions for themselves and their children.

Web Sites

  • GF/CF Kids (Includes new listserv for parents using the diet for the treatment of autism): www.gfcfdiet.com
  • Dr. Sidney Baker's new web site: www.sbakermd.com
  • William G. Crook, M.D.: www.yeastconnection.com
  • University of Pittsburgh Medical Center's Center for Complementary Medicine — Forum on Alternative and Innovative Therapies for Children with Developmental Disorders and Brain Injury: www.healing-arts.org/children
  • Dr. Jeff Bradstreet ("the Good News Doctor"): www.gnd.org
  • Paul Shattock at the University of Sunderland: osiris.
  • sunderland.ac.uk/autism/treat.html
  • Grain-free, dairy-free recipes: www.PaleoFood.com
  • Autism-FBI (Fighting Back with Dietary Intervention Listserver) — This list is for intermediate and advanced GF, CF, yeast-free dieters: www.onelist.com/subscribe.cgi/Autism-FBI
  • Net articles of Dr. Kalle Reichelt, Pediatric Research Institute, Oslo, Norway: www.panix.com/~donwiss/reichelt.html
  • Tampere University in Finland's abnormal findings of peptides in urine samples: www.sci.fi/~biopteri/e-index.html
  • Interview with Donna Williams — Did the Wrong Diet Make This Woman Autistic?: www.jaymuggs.demon.co.uk/donna. htm
  • Travel Tips — helpful in locating gluten-free food while traveling: www.idsl.net/celiac/travel/index.htm
  • Articles and other links to gluten-free diet information: www.GFlinks.com
  • ADHD and milk (lots of links): www.nowheat.com/grfx/nomilk/index.htm
  • Future Horizons — Books about autism: www.futurehorizons-autism.com
  • Stephen M. Edelson — Center for the Study of Autism (Oregon): www.autism.com
  • Can autism be detected at 18 months? The needle, the haystack, and the CHAT: php.iupui.edu/~rallen/chat.html
  • The CHAT test: php.iupui.edu/~rallen/thechat.html
  • The Autism Autoimmunity Project: www.gti.net/truegrit
  • The Progress in Medicine Foundation is a nonprofit organization supporting medical research and physicians using nonmainstream research-based medicine. You can get updates on Dr. Sinaiko's appeal at their web site: www.treatmentchoice.com

Copyright © 2000 by Karyn Seroussi

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What People are saying about this

Jeff Bradstreet
Karyn Seroussi offers us a researcher's insight, with a mother's touch, into what may be the greatest issue for America's children — the reasons for the recent epidemic of autism. The book reads as much like a detective novel, a personal diary, and an Internet chat room as it does a fine, critical assessment of this complex disorder.
Bernard Rimland
Effective treatments are available—but you are not likely to learn about these treatments from your child's doctor. You will learn about them, however, in the pages of this book.
— (Bernard Rimland, Ph.D., Director, Autism Research Institute)
Lisa S. Lewis
Karyn Seroussi's good sense and her ability to sort out fact from fiction make her the perfect person to tell the story of autism resarch. Add to that a son who got better and a scientist husband who helped figure out why.
— Lisa S. Lewis, Ph.D., author of Special Diets for Special Kids)
Jane M. El-Dahr
Evidence is increasing that children with autism have defective immune function, and that an external "trigger" seems to lead to the onset of the autistic symptoms. Although the view that autism is a neuro-gut-immune disorder might seem far-fetched, I believe that Karyn Seroussi is right on target.
— (Jane M. El-Dahr, M.D., Head of Pediatric Allergy, Immunology & Rheumatology, Tulane Medical Center/Tulane Hospital for Children)

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