Each Day I Like It Better

Amy Lutz

Description

In the fall of 2009, Amy Lutz and her husband, Andy, struggled with one of the worst decisions parents could possibly face: whether they could safely keep their autistic ten-year-old son, Jonah, at home any longer. Multiple medication trials, a long procession of behavior modification strategies, and even an almost year-long hospitalization had all failed to control his violent rages. Desperate to stop the attacks that endangered family members, caregivers, and even Jonah himself, Amy and Andy decided to try the controversial procedure of electroconvulsive therapy or ECT. Over the last three years, Jonah has received 136 treatments. His aggression has greatly diminished, and for the first time Jonah, now fourteen, is moving to a less restricted school.

Each Day I Like It Better recounts the journeys of Jonah and seven other children and their families (interviewed by the author) in their quests for appropriate educational placements and therapeutic interventions. The author describes their varied, but mostly successful, experiences with ECT.

A survey of research on pediatric ECT is incorporated into the narrative, and a foreword by child psychiatrist Dirk Dhossche and ECT researcher and practitioner Charles Kellner explains how ECT works, the side effects patients may experience, and its current use in the treatment of autism, catatonia, and violent behavior in children.

Sujets

• Caregiving
• Medical
• Médecine
• Psychiatry
• Caregiver
• Psychology
• Education
• Health

Informations

• Publié par: Vanderbilt University Press
• Date de parution: 15 avril 2014
• Nombre de lectures: 1
• EAN13: 9780826519771
• Langue: English
• Poids de l'ouvrage: 1 Mo

Extrait

Each Day I Like It Better
Each Day I Like It Better

AUTISM, ECT, AND THE TREATMENT OF OUR MOST IMPAIRED CHILDREN
AMY S. F. LUTZ
VANDERBILT UNIVERSITY PRESS Nashville
© 2014 by Amy S. F. Lutz
All rights reserved
Published 2014 by Vanderbilt University Press
Nashville, Tennessee 37235
This book is printed on acid-free paper.
Manufactured in the United States of America
Frontispiece photograph by Amy Lutz
Text design by Rich Hendel
Composition by Vanderbilt University Press
Library of Congress Cataloging-in-Publication Data on file
LC control number 2013034804
LC classification number RJ506.A9L88 2013
Dewey class number 618.92'85882—dc23
ISBN 978-0-8265-1975-7 (hardcover)
ISBN 978-0-8265-1976-4 (paperback)
ISBN 978-0-8265-1977-1 (ebook)
For Jonah, Matthew, Paul, Gary, David, Sam, John, and Alex
Contents
Foreword
by Charles Kellner, MD, and Dirk Dhossche, MD
1. JONAH, 2009
The Debate on Cognitive Side Effects
2. MATTHEW
3. JONAH, JANUARY–MARCH 2010
The Efficacy Studies
4. PAUL
5. JONAH, MARCH 2010
ECT Begins
6. GARY AND DAVID
7. JONAH, MARCH–APRIL 2010
One Step Forward, Two Steps Back
8. SAM
9. JONAH, APRIL 2010
Maintenance Begins
10. ALEX
11. JONAH, AUGUST–SEPTEMBER 2010
How Does ECT Work?
12. JOHN
13. THE ECT CONTROVERSY
Epilogue, January 26, 2011: The FDA Hearing
Afterword, May 16, 2013
Acknowledgments
Notes
Index
If love were the cure, I would have been healed a long time ago.
—Martha Manning,
Undercurrents: A Life
Beneath the Surface
Foreword
BY CHARLES KELLNER, MD, & DIRK DHOSSCHE, MD
“You don’t still use ECT, and surely not in children, do you?” is the first question often blurted out by parents, medical professionals, and lay people when they hear that electroconvulsive therapy (ECT) is recommended as a potential treatment for a child or adolescent. The question is fraught with the prejudice and views promulgated by the anti-psychiatric movement since the 1970s and epitomized in the movie One Flew Over the Cuckoo’s Nest . It is also the first issue that Amy Lutz grapples with when finding out that ECT may benefit her nine-year-old son, Jonah, by relieving his unrelenting self-injury and aggressive rages.
Yet ECT comes out as the dark horse in Each Day I Like It Better: Autism, ECT, and the Treatment of Our Most Impaired Children . A courageous mother chronicles the effects of ECT in her child and several other children and adolescents with developmental delay. She believes that the benefits of ECT refute what she calls the “ Cuckoo s Nest culture.” We agree.
This book gives a first-hand account of the daily struggles of a family with the profoundly disruptive, out-of-control behaviors that some children with autism exhibit. It chronicles the journey that this family undertakes when ECT is recommended, and pursued, with considerable effort and persistence, in a collaboration between parents and physicians.
Amy and Andy Lutz first came to Mount Sinai Hospital in New York in 2009 for an ECT consultation, desperate for help for Jonah, who had been in an escalating manic state for two months. Jonah was too ill to be present at the consultation. ECT proved to be successful and life-changing in curbing the behaviors that otherwise would have required the child’s placement in a residential treatment setting away from the family.
ECT is not portrayed as a cure for autism. Amy Lutz tells about her hopes, fantasies, doubts, anxieties, desperation, and ultimately, relief when she sees the improvement in her son brought about by ECT and then maintenance ECT. The book is filled with heartfelt details, at times amusing, at times wrenching, but always informative for other parents who may face similar situations and difficulties when they explore ECT as a treatment option for their children.
As clinical scientists, we believe that the finding that reducing intractable repetitive acts of self-injury and aggressive rage in children with autism spectrum disorders may be a new indication for ECT has substantial scientific importance. The recommendation to use ECT for Jonah and the other children portrayed in this book was deliberate, not haphazard, based on theory and previous experience with ECT use in catatonia and mood disorders, both accepted clinical indications for ECT.
As academic ECT practitioners, we are impressed with the amount and scope of research on ECT and its history collected here but would also like to offer readers a basic understanding of the treatment so that they may more fully appreciate the clinical stories in this book.
ECT remains a controversial treatment for neurotypical adults, let alone for children with autism; however, it should not be, for either group. ECT is a mainstream treatment in modern psychiatry, and yet misperceptions about how it is done and what it is prescribed for continue, fueled largely by sensational media misrepresentations. Only abortion tops ECT as a controversial medical procedure.
ECT was invented in 1938, at a time when modern anesthesia techniques had not yet been developed. This early form of ECT, now referred to as “unmodified ECT,” was unfortunately done without any anesthesia or muscle relaxation. The frightening scene in One Flew Over the Cuckoo’s Nest , in which Jack Nicholson’s charcter is forced to undergo unmodified ECT, has remained the dominant image of ECT. Modern ECT bears no resemblance to the outmoded technique depicted in the movie.
ECT in contemporary psychiatric medicine is used to treat a limited number of severe psychiatric illnesses, usually mood or psychotic disorders in adults. While not really a treatment of “last resort,” it is usually recommended only after antidepressant and antipsychotic medications have been ineffective in relieving acute symptoms of depression or psychosis. For a small number of urgently ill patients, ECT is recommended as an initial treatment because it is so reliably effective and works quickly. For very suicidal patients or those whose weight loss from depression threatens their health, ECT can be lifesaving.
Modern ECT is administered as a series of treatments under full general anesthesia and muscle relaxation. When used to treat severe depression (by far the most common indication), a course of ECT, usually six to twelve treatments, is continued until the depressive symptoms have resolved. Because depression is an episodic, relapsing illness, ECT is typically stopped when the episode of depression is fully treated. Most patients are then continued on antidepressant and other psychotropic medications to stabilize their moods and to prevent subsequent episodes of depression. For patients with a history of frequent episodes of depression that are not prevented by medications, a form of intermittent ECT, called “maintenance ECT,” can be considered. This is usually done in an outpatient setting at a frequency ranging from every two to eight weeks.
The efficacy, safety, and side effects of ECT in children and adolescents are similar to those in adults. Modern clinical reviews on the use of ECT in children and adolescents report excellent improvement rates for depression, schizophrenia, mania, and catatonia. Prospective studies of ECT for psychotropic-refractory depression in adolescents also document significant clinical improvement. It is important to recognize that severe depression, mania, and schizophrenia typically present in adolescence rather than early childhood, thus reducing the likelihood of need for ECT in younger children for such indications. In adolescents, current studies support the use of ECT for the same indications as in adults and report equal clinical efficacy.
ECT is a remarkably safe procedure in adults, and there is no reason to believe that ECT is any less safe in children. In fact, because much of the medical morbidity and most of the (very rare) mortality of ECT is from cardiac events in elderly patients with severe cardiac disease, ECT is likely much safer in children. It is known that children have lower seizure thresholds than older patients and tend to have longer ECT seizures. For these reasons, the electrical stimulus dose used in pediatric ECT is considerably lower than that of adults. ECT practitioners who treat children are aware of the possibility of prolonged seizures, and are ready to end a seizure over 180 seconds in duration. This is typically done by administering additional anesthetic or intravenous benzodiazepine. The concern that the “devel oping brain” is vulnerable to ECT-induced damage is not supported by any credible evidence; on the other hand, there is reason to suspect that prolonged periods of severe depression or catatonia may be harmful to the brain. Recent evidence suggests that ECT, like other antidepressant treatments, may have neuroprotective and neurotropic effects.
A considerable body of basic and clinical science data (over ten thousand citations on PubMed) documents the many profound neurobiological effects ECT has on brain function. We know that monoamine neurotransmitter systems are enhanced, similar to the way antidepressant medications are believed to work. For example, hypothalamic-pituitary-adrenal (HPA) axis dysfunction, a biochemical abnormality implicated in certain disorders, is corrected by a course of ECT. Paradoxically, ECT is a potently anticonvulsant treatment: ECT recruits inhibitory brain mechanisms that turn off seizures. This is demonstrated by the fact that ECT-induced seizures become shorter and harder to elicit later in a course of treatment. The neurotropic effects of ECT are well described in