Saving Sammy: A Mother's Fight to Cure Her Son's OCD

This book raises awareness for parents of children who have been diagnosed with OCD and/or Tourette's and the direct link to PANDAS the way Jenny McCarthy's book, ''Louder than Words," raised awareness for parents of children with autism and the direct link to gluten. It is a must read for anyone. This story tells the tale of a mother struggling to save her child, Sammy, from his sudden onset of unusual behavior. These behaviors ranged from mild idiosyncrasies, in the beginning, to almost full-blown psychosis. Imagine watching your once healthy and normal child suddenly display symptoms such as: walking and eating dinner with eyes squished shut, refusing to use soap in the shower, or for that matter, showering; bursting into angry fits, crying and laughing within a matter of minutes, sliding against walls, stepping over imaginary walls, refusing to go out the front door, refusing to touch door knobs, or to even look at toes. The rituals he had to go through to even enter or exit a van were hour-long, painful excursions. And also imagine that this was a 12 year-old child who once was a math genius, and, with the onset of this unknown syndrome, was reduced to lying underneath couch covers. But imagine the worst part, this child, Sammy, knows there is something wrong and wants so badly to be better. Clearly, the author was disturbed by her son's behaviors and took him to numerous doctors. He was misdiagnosed several times. He was given the wrong medications numerous times. Some doctors were patronizing; others, indifferent. Still, this mother never stopped trying to find a cure for her son. This book does not read like a novel; rather, it reads more like a true-crime drama. Because, in the end, that's what it was. That this child suffered so long is a disgrace. (That is my opinion; the author does not state the same feeling.) The writing is analytical, sequential, detailed; rarely engaging in self pity or accusations. but at the same time, the author vividly recounts the emotions of herself and her other two sons. When her doctors could not provide a cure, she began to research. Many hours a day were attributed to this activity, as well as catering to the demand of an ever-needy, fully symptomatic OCD-ridden child, and the needs and wants of her other two sons...Finally, after all of her many hours of research, detailed observation, numerous doctor's appointments, and phone calls, she became convinced there was a strep factor. (PANDAS.) She was right. She had to convince a few doctors; some still remain unconvinced. The author, herself, is a "guardian ad litem." ( That is, a guardian appointed by the court to protect the interests of a minor.) One would think that a person with this type of background would have every type of resource at their fingertips for any situation involving any child. Sadly, this is not true. That is disturbing in that she had to fight for information that one would think would be easily available to her. This book poignantly points out the very reason we must be our own healthcare advocates. ..I read this book in a matter of one night. It was that interesting. I felt heartbreak for her family as well as joy when they felt it. This book should be read by everyone. The strep connection that was uncovered here is still not widely talked about. I had no idea before I read this book. YOU NEED TO KNOW THIS.

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

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.

You need to read this book if your child develops tics. Doctors in U.K. are ignorant of PANDAS that affects a lot of children who develop an autoimmune reaction to strep A bacteria, which is everywhere during winter and spring especially where children are together eg: classrooms. Well worth reading. It is a mothers journey on discovering the links between her son's sudden onset of tics and bizarre behaviour and a sore throat.

Amazing story, gives me hope for my 8 year old child who suffers with PANDAS. You really feel for Sammy, Beth and the boys.

Great book to read

A book filled with answers nobody else could provide. Highly recommended.

This is an incredible story that taught me a lot. I’d never heard of PANDAS and was astounded that the medical fraternity do not join the dots. There must be a lot of children suffering for no good reason other than this affliction is not understood properly.