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The story of one mother’s fight against the medical establishment to prove the link between infection-triggered PANDAS and her son’s sudden-onset OCD and Tourette syndrome.
The summer before entering sixth grade, Sammy, a bright and charming boy who lived on the coast of Maine, suddenly began to exhibit disturbing behavior. He walked and ate with his eyes shut, refused to bathe, burst into fits of rage, slithered against walls, and used his limbs instead of his hands to touch light switches, doorknobs, and faucets.
Sammy’s mother, Beth, already coping with the overwhelming responsibility of raising three sons alone, watched helplessly as her middle child descended into madness. Sammy was soon diagnosed with obsessive-compulsive disorder (OCD) and later with Tourette syndrome. Unwilling to accept the doctors’ prognoses for lifelong mental illness and repeated hospitalizations, Beth fought to uncover what was causing this decline. Beth’s quest took her to the center of the medical community’s raging debate about whether OCD and Tourette syndrome can be caused by PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections). With the battle lines firmly drawn, Beth searched until she found two cutting-edge doctors who answered that question with a definitive yes. Together, they cured Sammy. Five years later, he remains symptom free.
- Sales Rank: #134104 in Books
- Published on: 2010-10-05
- Released on: 2010-10-05
- Original language: English
- Number of items: 1
- Dimensions: 7.97" h x .60" w x 5.17" l, .46 pounds
- Binding: Paperback
- 272 pages
From Publishers Weekly
Starred Review. Maloney's debut chronicles her son, Sammy, and the illness that, almost overnight, transformed him from a sunny, bright boy (described by one teacher as "the purest math mind the school had ever seen") into an antisocial stranger "so dominated by obsessions, compulsions, and rules that daily life becomes impossible." Sammy's descent into mental illness was diagnosed as severe Obsessive-Compulsive Disorder, Tourette's and a number of other ailments, all promising a lifetime of disability; it wasn't until a family acquaintance, whose son exhibited the same symptoms for 10 years, urged Maloney to have Sammy tested for Strep that they learned his condition was treatable. Describing herself as "part courtroom lawyer and part detective," attorney Maloney perseveres with ferocity and sharp storytelling instincts, making this medical mystery-meant to inform families dealing with mental illness-a tear-wrenching crowd-pleaser.
Review
From Publishers Weekly (Starred)
Maloney's debut chronicles her son, Sammy, and the illness that, almost overnight, transformed him from a sunny, bright boy (described by one teacher as "the purest math mind the school had ever seen") into an antisocial stranger "so dominated by obsessions, compulsions, and rules that daily life becomes impossible." Sammy's descent into mental illness was diagnosed as severe Obsessive-Compulsive Disorder, Tourette's and a number of other ailments, all promising a lifetime of disability; it wasn't until a family acquaintance, whose son exhibited the same symptoms for 10 years, urged Maloney to have Sammy tested for Strep that they learned his condition was treatable. Describing herself as "part courtroom lawyer and part detective," attorney Maloney perseveres with ferocity and sharp storytelling instincts, making this medical mystery—meant to inform families dealing with mental illness—a tear-wrenching crowd-pleaser.
From Booklist
At 12, Maloney's son Sammy won math awards but exhibited bizarre symptoms. The newly divorced mother's concerns grew as Sammy started hopping and spinning instead of walking and repeatedly resorted to uncontrollable headbanging. His disintegration, diagnosed without any thought about causation as sudden onset obsessive-compulsive disorder, included verbal tics, hours-long crying jags, and sporadic refusals to eat. Linking infection to "mental" illness, as strep antibodies are linked to the neurological Tourette's syndrome, has been rejected by many doctors since the rise of psychoanalysis, but Maloney insisted Sammy be tested for strep titers when he became unable to attend school and to walk. He was diagnosed with pediatric neuropsychiatric disorders associated with streptococcal infections, caused by strep antibodes attacking the basal ganglia controlling behavior. Antibiotics ended two torturous years for the family, and Sammy's regains came as rapidly as the symptoms had overtaken him. This stirring account of a mother's determination and a boy's astonishing bravery makes you want to stand up and cheer. –Whitney Scott
++++++
"SAVING SAMMY is a remarkable journey of a mother's perseverance to save her son. Her discoveries may well hold the key to curing the lives of millions of others."
Daniel A. Geller, M.D. - Director Pediatric Obsessive Compulsive Disorder Program, Massachusetts General Hospital; Associate Professor of Psychiatry, Harvard Medical School
"Of all the children I've treated, Sammy is the one at both ends of the spectrum. I'd never seen one so sick or one who came so far. I think the difference was his mother. Her willingness to be aggressive and fight for her son may help in healing others."
Catherine D. Nicolaides, M.D. - Developmental Pediatrics - Marlton, New Jersey
“As a physician, SAVING SAMMY reminds me that we, as a profession, are prone to hubris. My heart aches for Beth and her family every time I think of the dozens of doctors who scoffed and dismissed the incredibly valuable information she provided them. Consideration should be given for making this book mandatory reading at all U.S. medical schools. As a parent, I am inspired because we all will have our battles and issues. Few will be of this magnitude, but whether my child has problems at school, the Y, summer camp or whatever, this story reminds me that there is no effort too great to expend on the beautiful creatures that are our children.”
Kevin Price, M.D.
General Surgeon, Southern Maine Medical Center
Biddeford, Maine
“With SAVING SAMMY, Beth Maloney is the first to document the harrowing journey as a mother of a son with strep-triggered OCD— known as PANDAS. This compelling story is written in such a clear and engaging manner that the reader is hard pressed to put it down. Ms. Maloney’s poignant description of both the ravages of the illness itself and the hurdles to find treatment not only sheds light on the dark corners of this disorder, but captures the universal anguish of any parent watching their child slip away and at the same time being determined to hold on with all their might. In this gripping memoir, we see living proof of the much contested connection between strep and OCD. We also experience the agony of a parent who knows that solutions are out there, but can only be accessed by overcoming the obstacles and biases within the medical community. By sharing her family's ordeal and ultimate triumph, Ms. Maloney urges us all to make a pivotal shift in how we look at mental illness and its cure. The quality of life for thousands, if not millions, of families depends on our doing so.
Tamar Chansky, Ph.D. - Author: Freeing Your Child from Obsessive Compulsive Disorder, Freeing Your Child from Anxiety and Freeing Your Child from Negative Thinking
Director, Children's Center for OCD and Anxiety, Plymouth Meeting PA
“There isn't a parent who would not want to have this information. The implications of this riveting story reach far beyond children who are afflicted with obsessive-compulsive disorder."
Christopher P. Leddy - Assistant Attorney General, State of Maine
“I might not have believed Sammy’s stunning transformation if I had not seen it for myself. I watched a gifted young mathematician robbed of his life, lose all control and hope, and then regain his former self. Beth Maloney’s relentless battle and ultimate success in reclaiming her son captures the heart of anyone who has ever loved a child. Her victory sheds new light on ways of treating mental illness and inspires us all to greater good.”
Fern Brown, M.S.Ed, CAS
Gifted and Talented Coordinator - Co-Director, Maine Odyssey of the Mind
From the Hardcover edition.
About the Author
BETH ALISON MALONEY is a successful Maine attorney and guardian ad litem. Before moving to Maine, she was an executive and attorney in the motion picture and television business in Los Angeles. Saving Sammy is her first book.
From the Hardcover edition.
Most helpful customer reviews
46 of 49 people found the following review helpful.
Incredible tale of courage, intelligence and perseverance
By Laura
What could be more compelling than the story of a mom who simply will not accept that her son's suddden onset OCD/Tourette's Syndrome is irreversible? At the age of twelve years old, Sammy began developing symptoms of OCD that grew in intensity over a fairly short period of time until they seemed to control all phases of his life. Sammy's mother, and his two brothers, were forced to watch helplessly as he went from being a normal young boy, who liked school, loved playing Dungeons and Dragons and was an acknowledged math wizard, to one who was positively paralyzed by his need to engage in ritualistic and repetitive behaviors that controlled his every movement; who could not touch a door handle or a telephone or virtually anything else; who could not attend to basic matters of hygiene or change his clothes, and who could not eat to the point of becoming emaciated and dehydrated. As Sammy's mom put her entire life on hold to attend to Sammy's condition, and even as Sammy bravely tried to continue going to school and to his math events (it could take him hours to get from the house to the car, and then from the car to his ultimate destination), eventually, Sammy became virtually housebound, and his mother with him. Sammy's mom was told that he had OCD (later he was diagnosed with Tourette's Syndrome as well), a difficult and probably irreversible mental illness which might get worse or might get better and was given various medications to help deal with its effects.
Sammy continued to deteriorate, and mom's research into her son's condition seemed to confirm that there was little that could be done for him. She continued to take him to doctors and continued to follow their advice concerrning medications, all the while watching her son develop new and more complex compulsions. Then by happenstance, a friend of a family member related to Sammy's mom her own story of a similar malady that had attacked her son, and its relationship to an undiagnosed strep infection. The remainder of the story focuses upon the efforts of Sammy's mom to first, confirm that her son suffered a similar strep condition (known as PANDAS) and second, to have the medical community recognize her plight and help her find a treatment that would help him. Courage and perseverance abound in this heroic tale, but you will also find a fair dose of mom's intelligence fueling her quest. What is truly amazing is the way the author continued her search for answers and her battle with the medical community while always attending first and foremost to her son's increasingly difficult demands on her time and attention. The "ups and downs" of improvements followed by lapses back into compulsions and emotional breakdowns could easily have leveled a weaker or less determined person.
I loved the way this book was written; it is a straightforward and honest account that rarely dwells directly upon the emotional trauma that the author suffered. When those emotions surface, however, they are all the more compelling. The stark simplicity with which the story is told underscores how heartbreaking Sammy's terrible transformation must have been for those who had to witness it, as well as the guarded nature of his family's reactions to his various improvements along the way. It's never really about mom, though, it's always about Sammy and his brothers. At one point in her journey, Ms. Maloney made a promise to God that her battle would not stop with her son's illness. She wasn't sure what she meant when she made that promise, but obviously her wrenching tale of her family's struggle is part of the payback. It will open your eyes to some truths about the medical profession that you might never have wanted to believe. Highly, highly recommended.
3 of 3 people found the following review helpful.
This book was brilliantly written. When I read this book
By Amazon Customer
This book was brilliantly written. When I read this book, I was on our journey with my son who has PANDAS. This book provided me with so much insight and comfort. Beth Maloney did an outstanding job at helping me further understand PANDAS and also to not feel so isolated. It also assisted me in not being timid when it came to advocating for my son in all arenas. She is a warrior mom. I was able to share this book with numerous family members who found it so helpful in trying to understand my son's challenges. I would also recommend Beth's follow-up bold, "Childhood Interrupted". It is an excellent resource.
1 of 1 people found the following review helpful.
This is a must read book for those who love, care for, or work with children!
By Sue Beauchamp
I have read this book cover to cover four times. The first time it was on a recommendation of a parent to purchase for our school district's parent resource center. I loved the book then because it's a story about a mother trusting her instincts to be persistent in getting her child the help he needed, even through a tremendous amount of obstacles and naysayers. Little did I know it would eventually become much more personal. Some years later when I connected that it might be a book helpful to my own family I reread it. It has helped guide our family in trusting our own instincts. While every child with PANDAS/PANS may have different presentations of the illness, the struggles, the heartbreak and the work to find help to save a child's life are similar.
The book gives hope to families who have literally overnight lost the child they knew. While this illness presents itself in ways that are very hard to even comprehend 'Saving Sammy' allows us to know that even at it's most severe we cannot stop seeking the answer to healing. Due to sharing Sammy's story, many families who are now experiencing this horrible illness can find help earlier on.
I loved this book from the first time I read it. I would recommend everyone reading it along with the author's other book 'Childhood Interrupted' which gives some concrete ways to move forward in seeking help. I can't thank Beth Alison Maloney and her family enough for sharing Sammy's story with the world. In their story of hope and healing we can find the strength we need.
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