Customer Reviews

Saving Sammy: Curing the Boy Who Caught OCD

5 star:		(43)
4 star:		(13)
3 star:		(4)
2 star:		(1)
1 star:		(1)

 

 

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.

Not a book that would be of interest to everyone, but it is a very well written, accurate account of what it is like to watch your child fall prey to OCD. It's also an excellent portrait of what it's like to be a mother of a child with OCD. I've lived it... and I found myself nodding, crying and saying "Yes!" over and over again while reading this book.

Desperate to save your child, with or without the help of others, you will do anything to figure out how to help them and save your family from crumbling around you. That quest is an exhausting, daunting, uncertain one that may lead you to fall into a pit of desperation when exhaustion and frustration overcome you. This book reminds you time and time again (if you are a parent of a child with OCD) that you are not alone in your feelings. I liked that about the book and it made me think I'd like the author if I met her because the thoughts and feelings she shares in the book are 'real'.

The author: A strong woman- a good mother - an advocate for her child - an attorney with a bright mind. The author gives hope to parents of children with OCD and through her own struggle illuminates the need for two things. First, the need to question doctors if what they are doing isn't working and second, the importance of being an advocate for looking outside the box when it comes to an answer.

If you are the parent or a guardian of a child with OCD... read this book. While what saved Sammy might not 'save' your child, it's certainly a good story and excellent information to keep in mind when looking to manage OCD.


My own experience with OCD:

My daughter showed signs of OCD following a traumatic incident when she was 5, whereby she went into anaphylactic shock. A severe allergic reaction seemed to be the turning point which allowed OCD into our lives. A previously joyous child turned into a fearful, socially reclusive oddity in first grade. Despite being considered 'gifted' academically, she was unable to open doors (because of germs), saw things in her food (black spots... so she stopped eating), couldn't sleep, washed her hands until they were raw and bleeding, asked the same questions over and over again - never accepting the answer, and developed many other gut-wrenching compulsions as her obsessive thinking continued.

We were lucky as our pediatrician is an exceptionally good one who when I took my daughter to her said "We need to do something. We are losing her." Counseling followed, but being so young, it wasn't easy to determine whether that was working or not. For a year and a half she didn't improve very much, and then got markedly worse when a very stressful event occurred in our lives. Another trip to the pediatrician yielded a new plan of attack. Within a week my daughter was seen by a psychiatrist who specializes in children and after a few months it was determined that therapy alone would not stop the progression of OCD. Zoloft was used and within 2 weeks my daughter's compulsions slowed and she said "I feel 'lighter' and my head isn't telling me to do things all the time."

With the help of 1mg of Melatonin each night, sleeping soundly had become the norm once again and her joyful spirit returned. She has been on Zoloft for 3 years now, taking a relatively small dose to manage her thoughts and compulsions. She continues therapy; once every 3 months or so, but rarely gives in to compulsions now and freely talks about OCD and how it has affected her life.

Stress and lack of sleep are the two things that always bring OCD to the forefront for her, so we try to eliminate as much of it as possible. She's just begun middle school this year and seems to be doing well, even with the additional stress of a new school, social anxiety and some demanding advanced classes.

Occasionally I'll notice a behavior or she'll say something to which I will respond 'Is that OCD talking or is that you?' On medication she is able to pause and respond normally.

For my child, unlike with Sammy, Zoloft worked. I am told that as she matures she will change hormonally and may not even need medication when she's in her late teens to early twenties. I hope for that, but in all honesty I'm just relieved that we found people to help her - and yes, our family - to manage the OCD monster that invaded our lives so unexpectedly 6 years ago.

I did blame myself at one time for the OCD. Wondering if I had failed as a parent to protect her - just as the author, Ms. Beth Alison Maloney, describes feeling in this book. In the end what I've learned is that to continue to fight for your child is the important thing, and to never lose sight of hope, which is what I liked so much about Saving Sammy: Curing the Boy Who Caught OCD."

As a clinical psychologist, I was trained to believe that mental illness is not "caught." Individuals may be born with a certain genetic predisposition or they may acquire their disorder as a result of difficult life experiences, but since psychoanalysis there has been no accepted theory of infection or transmission. (Even now, as this book will tell you, there is still not wide acceptance.)

Then along comes this important, well-written account. The author, an attorney who serves as a guardian ad litem on behalf of neglected and abused children, started to notice that her 12-year-old son Sammy was exhibiting some strange behaviors: stepping over invisible walls, holding his breath, spinning and jumping, not being able to eat when he saw bare feet, etc. Things escalated to the point where it would take him perhaps two hours to go from his house to the car and another couple of hours to get from the car to his intended destination. He could no longer tolerate people touching him or the tasks of personal hygiene. He could not open doors or flush the toilet. He could not eat food as he did before, bringing him to the brink of emaciation and dehydration. Eventually he became housebound, and his mother along with him. When she sought medical help, Sammy was diagnosed with obsessive-compulsive disorder and later Tourette`s Syndrome. She was told that his condition might wax and wane, but that it was basically incurable.

Then a friend of her mother's told Maloney--who was suffering by now under the strain of Sammy's demanding care--that her own son had similar symptoms for ten years due to an undiagnosed strep infection. A blood test confirmed this diagnosis for Sammy and helped to identify his condition as PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections). Children with this disorder typically show a sudden onset of symptoms including motor or vocal tics, obsessions and/or compulsions. The mechanism behind this phenomenon is unknown, but is suspected to occur when the body produces antibodies to fight the bacterial infection of strep and mistakenly attacks the brain instead.

Armed with this information, Maloney marshaled her prodigious research, analytic, documentation, and advocacy skills on Sammy's behalf. She cut a swath through those doctors who were ill-equipped or even resistant to work with this diagnosis, until she found an outstanding developmental pediatrician and child psychiatrist who helped put together a treatment protocol consisting of vaious antibiotics and other drugs. Immediate progress was apparent as soon as treatment was initiated, letting everyone know they were on the right track, but there were setbacks and adjustments that had to be made along the way. Eventually, however, Sammy recovered and has now been symptom-free for five years. He went on to pursue his genius in math and to resume being the happy and well-adjusted kid he was before his illness.

Bottom line, do I accept the contagion theory? I don't have enough information to say yes or no. But I do like the fact that this book stimulates new questions for mental health professionals to ponder and investigate.

I expect this book to draw critics regarding the diagnosis of PANDAS. It's also very easy to criticize the mom if you have never lived through the horror of watching a healthy, intelligent, engaging (I don't dare use the word "normal") child of yours have his or her mind stolen virtually overnight. I walked in this woman's shoes last year. The author does a commendable job of recounting the accumulation of the illness, because there really are no words to adequately convey the experience. It's like being on a water slide into hell. I cried through much of the book.

I was fortunate. My 6 year old daughter DID fit the "accepted profile" of a PANDAS patient. We had sharp and open minded doctors who caught it quickly. I had never heard of PANDAS before her diagnosis, so I wasn't "looking for it". Of course, there were multiple tests to rule out other issues such as seizure disorders. After just a few days on amoxicillin she was dramatically improved, and after a couple of months more on antibiotics, she was "back". I was lucky not to watch my child deteriorate for more than a year, as was the author's experience. We also did not spend tens of thousands of dollars on psychiatric visits and medications. Again, because we had a sharp pediatrician and an up-to-date pediatric psychiatrist.

Looking at her now, one would never know that just over a year ago my daughter couldn't speak normally (only in "baby talk"), couldn't write or draw because her hands trembled, couldn't tolerate the feeling most clothing or shoes, hopped rather than walked while flapping her hands, couldn't make even the smallest decision, spit constantly because she was afraid of swallowing it (usually at other people), was obsessed with germs and full trash cans, counted animals, babbled repetitive noises constantly, and flew into frequent "feral" rages that endangered everyone in the house. This is not behavior that is "unusual", "troubling", or "acting out" that might be assigned to stress. This is bizarre, debilitating, and sudden. There was no divorce, no move, none of the event or "lifestyle" triggers people are wont to assign cause.

I have no scientific argument to offer the skeptics because that is not my field. However, I know when one of my other children has strep because my daughter will start to show minor PANDAS symptoms. What appeared to be just a headache and a cough in my son will turn up a positive strep test. There also appears to be a genetic predisposition to strep-related complications. We spent last New Year's Eve in the ER because suddenly my son could not walk, his knees were swollen, and his lower legs were covered in a bizarre rash. The diagnosis? Strep. His complication was something called anaphalactoid purpura.

Do I think that all OCD is caused by strep or other infectious triggers? No. But in a subset of kids displaying sudden OCD-like behaviors there is convincing evidence that it is somehow related to strep throat infection. Parents (and doctors) owe it to themselves and their children to at least run a strep test if they are ever faced with sudden, explosive onset of these behaviors. If this book makes even one parent or doctor pause and consider then it will have been effective.

I do not think the author even remotely argues that all, or even most, OCD is caused by strep, and that should not be the focus of critique. There are harsh words for "dismissive" doctors, and this receives too much literary focus vs. the lack of efficacy of their prescribed treatments (makes a good screenplay, but detracts from a book, in my opinion).

Read this book because it's a harrowing, gripping tale that illustrates what parents and doctors DON'T know. And it could happen to you or someone you know. I shudder to think how many children may have been institutionalized in the past that could have led fulfilling, productive lives. Tragic, and inspiring.

Are your kids healthy and happy? If so, you are way ahead of the game. Just ask Beth Alison Maloney, whose son, Sammy, came down with a mysterious malady at the age of twelve. He started yelling at the treetops and the squirrels, refused to go into bed at night, could not enter or exit through the front door of his home, and did not allow anyone to touch him. Beth, who is a single parent with three brilliant and personable boys, had just moved to a new house in Kennebunkport, Maine. (The scenery is gorgeous, and Maloney eloquently describes the wondrous beauty of Maine throughout the seasons.) When Sammy changes so drastically, Beth assumes that the boy is distressed about the move or angry about his parents' divorce. Perhaps, she thought, he is acting out as an expression of his displeasure.

Unfortunately, as time goes by, Sammy's behavior becomes more extreme and compulsive (head banging, twitching, hopping, verbal tics, difficulty getting in and out of a van, among others). Beth's life comes to a standstill and her other children, James and Josh, are adversely affected by Sammy's constant need for attention. Since Sammy cannot attend school regularly, Beth is on duty 24/7, aghast at her child's ever worsening condition and desperate to come up with a strategy to help him. Soon, Sammy is unable to sleep, eat normally, or even take a shower. Psychological counseling and a high dose of an anti-depressant do not help. When Beth tells Sammy to stop acting so bizarrely, he replies hysterically, "I can't! It's like a mental itch!" Beth finds it hard to accept that her son had become unhinged out of the blue and that he could stay this way for the rest of his life. Her pleasures (including socializing, kayaking on the beautiful waters of Maine, and even enjoying a restful night in bed) take a back seat to finding the answers that she needs.

Life might have continued in this vein indefinitely if someone had not tipped Beth off to the possibility that her son's obsessive compulsive disorder and Tourette-like symptoms may stem from an undiagnosed strep infection. Beth embarks on a frustrating odyssey, visiting one doctor after another until she at last learns what is really wrong with Sammy. This is a heartbreaking and, ultimately, inspiring and hopeful book about a mother whose love for her child impels her to become his champion at school, in doctors' offices, and wherever he needs advocate. She accomplishes a great deal by networking, surfing the Internet, and finally, locating a developmental pediatrician in New Jersey and a child psychiatrist in Boston who proved to be godsends. Maloney's tenacity, selfless devotion, and intelligence shine through; readers will cheer for this courageous and loving mother. Beth made a vow and she has kept it. If Sammy were to get well, she promised, she would publicize his case so that other children who are suffering needlessly might also receive the help they need. "Saving Sammy" is a poignant story of a family in crisis, and it highlights how mysterious the world of medicine still is. Even with all of our technological advances, sometimes it all comes down to a great diagnostician who realizes that the most improbable answer can be the right one. Beth says, "There are some people who can do more for you in an hour than others can do in a lifetime."

I think it is wonderful that the author decided to put her story out there. I think it is important for everyone to be aware of PANDAS because it won't always present as clearly as it did for Sammy. It might not be such obvious OCD. Write down everything you notice, even if it seems so minor and insignificance. Look at the big picture, not a bloodtest number before ruling out PANDAS. My son has low strep titers and only minor tics and his ocd behaviors are very easy to miss but there is no doubt in my mind that he has PANDAS. I know for some children antibiotics is the answer but there are so many children suffering from this who either can't get their doctors to prescribe the correct antibiotic for long enough or who need a different treatment.

I found the reviews describing this mother as a monster to be very disturbing. This is clearly written by a mother who loved her son enough that she would stop at nothing to help him.

This is an amazing story that every parent needs to read, especially if your son or daughter has behavior that might suggest a "quirky" personality or an outright mental illness. Most people do not realize that strep is extremely prevalent at schools and elsewhere, and your son or daughter may not have any symptoms like a sore throat or a fever. Insist that your physican or clinic staff administer a strep test. And if those come back negative and your child still as odd behavior, get a blood test to rule out strep. These are some of the least expensive tests and should be routine for your physician to run. Physicians often have "notices to patients about antibiotic use" posted visibly in their offices which explain why they won't administer them if your child has no typical symtoms of a fever, etc. As a parent you need to push for the antibiotics. Has anyone ever noticed at all of these mental health issues with our school aged kids have increased dramatically since phsycians started limited antibiotic usage? Another amazing statistic: there are as many people with OCD (obsessive compulsive disorder) as there are people with diabetes. Shocking. We need to step forward and get treatment for this. The brain is a vital organ in the body just as is the heart, liver, kidney or pancreas and all of those maladies are widely treated with medication and people share their stories routinely when one of those organs is involved. Brain disorders need to get attention. Especially when some of them are so easily treatable!

Things I liked about the book:
-the author did a good job of showing how disruptive this disease can be
-overall fast read, not too technical
-some good information about PANDAS and antibiotics including the concepts that dose/type/long length of treatment is important. I also liked that the book showed that kids can get PANDAS (and strep) without exhibiting typical strep symptoms (sore throat, fever, etc).
-a good story about how it is important to do your own research and not take what every doctor says as the final word

The main thing I disliked about the book:
-the author unknowingly perpetuates confusion regarding the significance of strep titers in diagnosing PANDAS

Ms. Maloney finds out Sammy has PANDAS by checking his ASO titers. Unfortunately, the big implication is that if your child does NOT have elevated ASO titers, then he doesn't have PANDAS, end of story. The author even claims when discussing throat cultures vs. blood tests (pg. 120) "A blood test for strep is far more accurate". (Note: she doesn't bother to provide a reference to support this statement.) This is a real sore point for me as my 7-year-old had PANDAS severe enough to require hospitalization yet her strep titers were consistently low. On the other hand, her throat culture was positive (2 mo. after fever and onset of behavior change). Clearly, not all kids with strep (or PANDAS) produce elevated ASO/anti-dnase B titers. (BTW, there is a 2003 paper "Immune Response to Group A streptococcal C5a Peptidase in Children: Implications for Vaccine Development" which confirms that 37% of children have no rise in either ASO or anti-dnase b despite positive throat cultures 1 mo. earlier.) Moreover, these two commonly measured anti-bodies are not currently thought to be the same antibodies responsible for the auto-immune reaction in PANDAS. While a complete discussion on this topic is outside the scope of this review, the bottom line is that some parents may prematurely dismiss PANDAS as a diagnosis if they base too much on this blood test. Sadly, there is a lot of confusion in the medical community about the significance ASO (or anti-dnase B) and this book perpetuates that confusion. The bottom line is that ASO is NOT a test for PANDAS and kids with PANDAS can have low strep titers.

I should make it clear that I admire Ms. Maloney's drive to share her son's story in order to get the word out about PANDAS. These are some valuable messages in this book. However, I just want to implore other parents to not take EVERTYTHING that is said by Ms. Maloney as the final word on PANDAS diagnosis and treatment...and definitely continue to dig a little deeper and do your own research and if you think your child may have this disease.

This book was amazing. It is the story of a mother who tries to help her son who appears to come down with a mental illness. It is written so well that you feel like you are on the journey with the mother. You can feel her pain as she try to help her son. I am amazed at how well she handled the stress of being a single mother to three kids with one very ill. This book could help so many children who might become ill. It should be a must read for doctors and educators of children.

An amazing and emotional story of how one mother literally saved her son's life. This is an incredible story about a boy who caught OCD. I urge anyone who has regular contact with children to read this book. This mother discovered what has not reached the mainstream medical community yet, that sometimes there is a connection between infections and mental illness.

I don't know how this mother was able to cope with her son's behaviors. My hat's off to her for her unfaltering devotion to discovering what was happening to her son. I can easily imagine a very different result for this child if he had had a less capable, intelligent and resourceful mother. As it was she stumbled on to the connection between strep and OCD through a personal friend of her mother's.

I found the information Beth Alison Maloney shares in this book fascinating as well as frightening; schizophrenia has been linked to the flu, bipolar disorder to herpes, autism to Lyme disease and OCD and Tourette's to strep.

I think this is an important book for people who have regular contact with children to read. I found it to be a well organized, well written and very compelling story that took me less than a day to read.

I wish Beth Alison Maloney and her family all the best and my heart goes out to families who are making similar struggles. I hope that some of them will find their way to this book. Read it and then tell a friend about it.