Estimated reading time: 4 – 7 minutes
Saving Sammy
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I was stunned by Beth Maloney?s persistence and resilience. Few people who have not cared for a loved one with severe mental illness can fully appreciate the isolation and desperation of it. Ms. Maloney was fortunate to have a supportive school system, understanding relatives, and a network of devoted friends; even so, all of those people get to go home at the end of the day to recharge. Beth Maloney, divorced mother of three, not only had to deal with Sammy and his severe illness, 24/7, for nearly two years, she had to hold it together and be the best mother she could be to her other two sons, Josh and James. Somehow, through all of it, she held onto a ragged scrap of hope ? because what else can a mother do? Anything else would have been to give up on her son, and she was determined to have him back, healthy and whole. This book stirred up feelings of anger as I read it. Too few doctors are willing to practice the ?art? of medicine, as Ms. Maloney put it. It?s safest to stick with the generally accepted diagnoses and conventional treatments, and doctors don?t always welcome probing questions and new theories, particularly those presented by patients, parents, and other caregivers. In Sammy?s case, an amazing number of doctors simply refused to see him or attempt to treat him. In the long run, this may have proven to be a blessing, as it led Ms. Maloney to the doctors who were brave enough to try, and to succeed. But most doctors refused to seriously consider a link between infection and Sammy?s debilitating OCD behaviors. This was not particularly surprising; Sammy had never been diagnosed with a strep infection. Yet blood tests revealed an elevated strep titer ? evidence of a previous strep infection.
Beth Alison Maloney, author of Saving Sammy
highlights the need for courage, creativity, and compassion in the medical field. It also offers hope to other parents who may be struggling with a baffling diagnosis of pediatric mental illness. Ms. Maloney, in a postscript, describes meeting another mother whose son was diagnosed with Pervasive Developmental Disorder, an autism spectrum disability. Though this child?s symptoms were markedly different from Sammy?s, Ms. Maloney thought to ask if he had ever had an infection requiring antibiotics. ?Not since he was sixteen months old,? the other mother answered. ?He had Lyme Disease.? At Ms. Maloney?s urging, the mother had her son tested for Lyme Disease. It turned out that he had an active Lyme infection.
Sammy: A Boy Full of Hope
Watch Sammy’s story on the Today Show:
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Excellent review. Someone very close to me developed epilepsy as a child after suffering an intensely – untreated – high fever. There’s no link of course. Doctors said so. At the time. Turns out research over the last 30 years looks to put that to the lie. Yeah, the girl had her brain baked, and nothing happened? You’re sure? Really?
.-= Dave Doolin hopes you will read…I?ve Just Wasted $53 on Hosting and a Domain, s***, What Now? HELP!? =-.
@Dave Doolin, thank you! I was stunned to read this book – angry, empathetic, fearful, excited – and absolutely admire this woman’s persistent refusal to accept a diagnosis that made no logical sense to her, and her stubborn insistence on having her smart, healthy son back.
You know, I watched the video after reading the book – after writing the review, in fact. And Beth Maloney has done a very good job of describing her son’s odd behaviors during his illness, but seeing it on video really reinforces the hell they went through. This book has already helped some families, and I have no doubt it will help even more.
This was great Holly. I know that if I am the mother, I’d do the same. And I guess I will first resort to consulting Doc Z for the matter. I know he won’t stick with the generally accepted medical practices. On the second thought, I fear that he might brought out that it could have been caused by the Zorlonians? LOL!
@madz, LOL!! You know, a mother in search of a cure for her child would consider the Zorlonian explanation… Which is, I’m sure, one reason medical “experts” are reluctant to pursue the “offbeat” theories. Many have proven useless or harmful (if only in terms of delaying treatment for something that might have been effectively treated with conventional methods). BUT, when conventional treatments fail or perform differently than expected, I want a doctor who’s willing to think outside the box and look at everything, particularly where my children are concerned.
I don’t blame psychiatrists for not immediately thinking, “Okay, there might be something to this strep idea.” But what surprised me was the downright obstructionist attitude Ms. Maloney ran into with so many doctors, before finding Dr. Geller and Dr. Nicolaides. What did NOT surprise me was the general unavailability of mental health resources in her state, and that’s another problem that urgently needs to be addressed throughout the U.S.
There are many stories that highlights the need to be compassionate with sick people. Compassion and TLC are good therapeutic remedies for illnesses. If it does not “cure” the disease it will definitely ease the pain.
.-= Jena Isle hopes you will read…WOOF Contest ? Top Picks for November 6, 2009 =-.
That should read:
“There are many stories that HIGHLIGHT the need to be compassionate with sick people.”
Sorry, the keypads are fatigued again…he he he..
.-= Jena Isle hopes you will read…WOOF Contest ? Top Picks for November 6, 2009 =-.
@Jena Isle, and their families. You know, I remember reading books ostensibly aimed at helping caregivers maintain their own sanity, but were in fact just tips on how to give their sick loved one better/more care. When someone is THIS ill, it affects the whole family. Finding a cure heals not only the patient, but his loved ones.
Great review, Holly! I’m so happy you enjoyed the book. As a mom myself I really appreciate Beth’s tenacity.
Thanks so much for reading/reviewing Saving Sammy for TLC Book Tours! It is much appreciated!
@Lisamm, it is an excellent book, Lisa. Thank YOU for giving me the opportunity to share it. I think parents, caregivers, and doctors – especially pediatricians, psychiatrists, and psychologists – should read it and be aware of the possible link between infections and mental illness. Imagine the months and years of grief it could save.
That was amazing. Before I read it I was going holy smokes “can you catch OCD?”
I’m glad they’re OK though. And more glad that the more people know about it, the less likely it will happen again to someone else.
This makes for a good House episode too. Hehe.
@reyjr, oh my gosh, Rey – wouldn’t it though? Is there a Dr. House in the house? What a fantastic idea.
To me, one of the coolest things about this book is the HOPE it offers. (That may be one of the cruelest things, too – because I don’t think mental illness is ALWAYS linked to infection, though it would be wonderful in some ways, if it were.) Imagine finding out there was a CURE for your loved one’s mental illness – and it came in the form of a simple antibiotic?
@Holly Jahangiri, reminds me of that movie – The Notebook. I saw it on an airplane. I had a hard time hiding my tears. LOL!
How cruel is it to lose your memory? Argh.
I agree with on that it brings hope, but may also be false hope..
.-= reyjr hopes you will read…"Can’t you just cut me some slacks?!" and other hilarious one liners =-.
Sometimes doctors need to listen to a mother. The strength Beth showed came from the in depth “knowledge” that a mother can have.
Thanks, Holly, for reading this book and sharing it with us through the review in your blog.
.-= Vivian Zabel hopes you will read…Available next week – A Puppy, Not a Guppy =-.
@Vivian Zabel, too many people fail to take that motherly instinct seriously enough – but it IS what keeps us going, some days, isn’t it?
Wow! What an incredible story! I wonder how prevalent this is? I wonder what other mental illnesses could be caused by what are considered to be relatively minor infections in others? It makes me think of autism (I think one type mentioned in this book) and how it may be brought on by something that wouldn’t affect others. Genetic susceptibilities. It’s a whole new area to me. People not born with conditions, but born without defenses against certain bacteria and whatnot.
I hope this book reaches the right people, and that more kids are helped by it. That woman is so strong, to have dealt with this, and cared for her two other sons simultaneously. She must have gone to bed heartbroken every single night only to wake up and then “remember” every single morning.
.-= Heather Kephart hopes you will read…Comment on Mad Men Yourself! by Jena Isle =-.
@Heather Kephart, isn’t it, though? I wondered, too. It has seemed to me that diagnoses of mental illness in children are fairly common these days. At the same time, bacteria are developing resistance to antibiotics.
In this case, Sammy had something known as PANDAS – Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. “The theory of PANDAS is simple: strep antibodies attack the basal ganglia, which is the area of the brain that controls behavior.” (Saving Sammy, p. 119)
So if I am understanding correctly, it’s really the patient’s own immune system’s RESPONSE to strep that’s causing the mental illness, and it needs help – in the form of potent antibiotics – to get the strep under control so that the level of antibodies in the patient’s system can decrease.
It seems that autoimmune disorders are also on the rise. It does make you wonder, doesn’t it?
Beth Maloney’s story reminded me of Lorenzo’s Oil. Not our Lorenzo but the movie starring Susan Sarandon. Of course it’s just a movie, and might just be loosely based on a true story if at all.
Do you think the litigation happy nature of Western culture contributes to this over cautiousness of doctors? Nothing, just occurred to me.
@jan geronimo, Beth even mentions Lorenzo’s Oil in her book; it inspired her to dig and keep digging for information. It is based on a true story. See http://en.wikipedia.org/wiki/Lorenzo%27s_Oil_%28film%29 for more details. Lorenzo Ordone lived to be 30 years old.
Of course. For them, it’s “damned if you do, damned if you don’t.” They can’t go around using children as guinea pigs, now, can they? Even if the parents are begging them to try anything in an effort to save their child. Takes guts, compassion, and – as Ms. Maloney says – a willingness to practice the “art” of medicine, not just the science. I’m not sure what the answer is. You don’t want to give all the quacks free license, but it would be good if there were some sort of “desperation clause” that could protect doctors who are trying – with the informed consent of the patient or his parents – to do something extraordinary to help in cases like Sammy’s.
.-= Holly Jahangiri hopes you will read…Saving Sammy: Curing the Boy Who Caught OCD (Book Review) =-.
Holly, you did a great job on your review of the Saving Sammy story. This story is so improtant because it proves to Dr’s out there, who say PANDAS is not a real disorder, that strong antibiotics given in high doses did take away Sammy’s OCD. We have been struggling to find Dr’s to help us for seven yeas now since my son then age 12 months, came down with strep and tics and chorea movements overnight. Since then we had a saw toothed pattern of repeat episodes after strep exposures and fevers with virals. Over time my son has become Tourettes, OCD, ADHD and Aspergers. Now his symptoms are always present although they still wax and wane. The only way we can get help from Dr’s is through prescriptions for medications like tenex, clonidine, risperdal and prozac. More research needs done and Beth is giving PANDAS the recognition to drive the Dr’s to continue to study PANDAS. NIMH has not come up with any updates in many years on how to treat PANDAS. Right now with the exposure of PANDAS in the media, I hope treaments will be updated on NIMH website because Dr’s will turn to them for guidance. The contraversy of the diagnosis and treatment is hurting our kids and our families. Should we do IVIG, PEX, antibiotics longterm? We need answers and Beth is forcing Dr’s to step to the plate. Dr. M. Cunningham is doing a study on CaM Kinase II levels in PANDAS patients being elevated. Few Dr’s are stepping to the plate and Beth and her PANDAS foundation will encourage them to do so. Thanks for reviewing her book.
@michele, your story is heartbreaking. Thank you for sharing it here, and I’m glad to be able to help spread the word in some small way.
You would think that PANDAS represented an exciting field of study for medical researchers, wouldn’t you? A possible breakthrough in the treatment – maybe even prevention – of pediatric mental illness?
I hope that your son gets the help he needs. Be persistent. Be a mama tiger. I know how isolated you must feel, and how frustrated. You’re not alone, though there’s precious little real support for parents like you and Beth in the community, either. Be good to yourself, too.