OCD Profile: Sammy

This month we are looking at an organizing extreme, obsessive-compulsive disorder (OCD), both to better understand our own organizing motivations and the motivations of OCD-affected individuals, which ultimately impact all of us.

While the pre-teen and teenage years are challenging for most people, they are especially tough for children experiencing OCD for the first time and those children’s families. The majority of OCD affected adults seem to experience a sudden onset of symptoms in the early teen to early adult years (approximately ages 12-21). For both the child, the parent and the family, this is an extremely scary and frustrating time. One moment you have a normally progressing child just about to enter the teenage years and the next moment you have a preteen suffering so severely from vague fears and strange movements that you begin to wonder whether your child will ever get better and is lost to you forever.

Saving Sammy: Curing the Boy Who Caught OCD tells this experience from the mother’s perspective. Beth Alison Maloney was raising three boys as a single, working mom after a recent divorce. She moved the boys to Maine while their father remained in the Los Angeles area. Her eldest son Josh showed great proficiency in math and science and was accepted to a Maine boarding school for math and sciences. Her second son, Sammy, is also extremely gifted in math and seems to be recognized as a borderline genius/savant by his teachers. Not much is said about the talents of her third and youngest son, James, who was only 8 at the time, but he seems normal and well-adjusted in the story.

After Sammy turns 12 and the family moves to a new home, Sammy begins behaving very strangely. The changes are subtle at first and progressively become more severe.

“He now had verbal tics that peppered his speech like hiccups. . .. As time went on . . . there were more and more tics . . . Within a few weeks, they had completely changed his speech pattern.

He stopped flushing the toilet . . . and resumed permanent residence on the couch in the den. When he occasionally changed his clothes, it took him forty-five minutes to do so.

He told me the house was full of invisible walls. They sprouted like lasers in every direction, from electrical outlets television sets, portable telephones, and DVD players. . . . He had to step over or duck under each one, depending on their location. . . .

Each morning he had to have a series of different drinks . . . milk, orange juice, apple juice, pink lemonade and grape juice. . . .

He stopped walking entirely. He jumped and hopped instead. The pounding, pounding was relentless. Lamps fell off tables. Smoke detectors fell off the walls. . .”

–Beth Alison Maloney, Saving Sammy

Sammy’s behavior becomes all consuming. He can’t eat, he can’t go to school because of fears about entering the school building. Any time he or the family goes anywhere, they literally have to wait for hours for Sammy to complete the physical rituals needed to enter the car, exit a restroom, walk through the front door of a building, etc. Sammy spends hours locked in his room at home. He is awake often all night long wandering the halls of the home. Ms. Maloney is spending as much time monitoring Sammy as she would a fussy newborn. It’s utterly exhausting.

Desperate for answers, Ms. Maloney begins consulting doctors, psychologists and psychiatrists. They diagnose Sammy with OCD and then later with Tourette’s syndrome. They prescribe various medications and Sammy begins counseling sessions. All of this effort is having very little effect and Sammy’s condition seems to be getting no better and sometimes worse.

Ultimately, Ms. Maloney is inspired by a friend to get her son tested for strep infection. The medical information here gets a little fuzzy for me to understand but it appears that in some cases children have been known to develop severe OCD-like symptoms after exposure to strep bacteria (a syndrome called PANDAS). Generally these children are quite young and they are either treated with antibiotics or a procedure that cleans their blood to remove strep antibodies.

Sammy’s story gets complicated here. Ms. Maloney makes the case that once her son was diagnosed with strep it was the answer to all their prayers and, once on a regimen of strong antibiotics, Sammy began to get better. He was eventually completely healed of all his symptoms and the symptoms only seem to recur when he is exposed to the strep virus.

Below you can watch an interview with the author and her son on the Today show in 2009.

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It is an incredible story and very well-written. It gives you the day-by-day experience of living with someone with severe OCD and the impact it has not only on the affected person but the family and friends as well. It is also a bit of a love letter to the state of Maine. Ms. Maloney describes the scenery and events of Maine living so beautifully I now have put Kennebunkport as one of the vacation destinations we hope to visit soon.

Sammy’s story is inspiring but also controversial. Some of the medical issues include: 1) not all doctors seem to accept PANDAS as a diagnosis, 2) “strep infection” is surprisingly hard to define even with medical tests and 3) even the doctors who do accept PANDAS don’t agree that Sammy has it. Some prestigious doctors Sammy consults in neurology and other fields tell his mother outright that he does not have PANDAS and instead has a permanent mental illness.

Dr. Roger Kurlan, is one of the leading PANDAS “nonbelievers” as Ms. Maloney calls them in the book. In this recent webcast from 2010, Dr. Kurlan reviews some of his most recent research on PANDAS.  Dr. Kurlan claims that his study comparing PANDAS-identified patients with non-PANDAS children with OCD and Tourette’s syndrome showed that strep-infection made OCD and Tourette’s symptoms worse in PANDAS children only 7-25% of the time. In other words, 75-93% of the time, exposure to strep had no correlation to their symptoms. Dr. Kurlan indicates that it is the natural course of Tourette’s syndrome to have symptoms wax and wane over time and children often get better and worse even with no medical intervention. Also, about 2 out of 3 children outgrow Tourette’s syndrome. Dr. Kurlan also indicates that exposure to any type of physical or emotional stress, from viruses and bacteria, to seasonal allergies, problems with family and friends and final exams can worsen the symptoms in patients with mental illnesses. Dr. Kurlan acknowledges that a PANDAS diagnosis might be useful in identifying a rare subset of children who are more susceptible to strep, but that ultimately, antibiotics are not a “cure” and traditional mental health therapies are still needed for PANDAS children.

So that leaves us with a lot of questions about Sammy. Does he have a new infection-related OCD condition that has not been discovered yet? Or could it be possible that his treatment and recovery was a bit of a coincidence? Could his recovery also be explained by his maturing into an older teen who was better able to implement cognitive behavioral therapy and better adapt to stressful situation such as coping with the divorce and visitation schedule and his brother leaving for boarding school. Toward the end of Sammy’s worst period he suddenly announces to his doctor:

“I found a loophole . . . I don’t need to do compulsions anymore. . . . So instead I do a substitute compulsion. . . Like I count to six on my fingers instead of going over an invisible wall.”

–Beth Alison Maloney, Saving Sammy

Sammy is so intelligent that it is not impossible to believe that he is able to construct a sort of giant chess match in his head for daily living. His internal conversation might read: “If I am thinking X, I need to do Y to avoid this thought and focus on Z a real thought.” His system generally works except perhaps when he is overly stressed or tired and his brain can’t keep up with it. Once the stress is removed, he can go back to normal functioning.

There are some very interesting social questions raised by this book as well. The first comes to communicating with your child about mental illness. Below is Ms. Maloney’s view:

“I still had not told Sammy the name of his disorder. There are two theories when it comes to children and mental illness. One is to treat the behaviors and keep the diagnosis confidential. The other is to share the diagnosis. Even some grown-ups never fully recover from some truths, so when it comes to children, I feel it is best to err on the side of caution.

Another reason to be cautious is that a mental illness diagnosis is never certain, and once a child is labeled, it tends to stick.”

–Beth Alison Maloney, Saving Sammy

Another issue comes up as to how close family and friends should treat someone with severe mental illness. Ms. Maloney was often isolated from friends and normal social interactions when dealing with the worst of Sammy’s illness. But there were still very good friends who stood by her and Sammy through thick and thin. I was especially moved by the description of Sammy’s friend Devers who wanted to come visit Sammy at his home. Devers had to comply with a myriad of requirements, including wearing socks with his sandals so that Sammy wouldn’t have to look at Devers’ toes. I imagine the compassion of friends like this is extremely important to the recovery process. In the average junior high or high school, Devers would take a lot of heat from his peers for visiting the “crazy kid,” but he stuck by his friend. I imagine that kindness will never be forgotten.

The story also gives the real picture of the stress experienced by families of the mentally ill. For many families struggling with OCD, Sammy’s story is the dream they have been hoping for. I imagine families affected by autism want to find similar “cures” to reclaim the children they once knew. As Ms. Maloney says to her eldest son, Josh, at a low point during Sammy’s treatment:

“Sammy’s doing better, don’t you think?” I asked, sliding the scrambled eggs from the pan to his plate.

“No, Mom, he’s not,” Josh answered impatiently. “And why do you keep saying he’s getting better when he’s not?” . . .

“Because if I thought this was it, that he’d never get better, and that for the rest of our lives it would be like this, I’m not sure I could get up in the morning and keep going,” I shoved the plate at him. “Got it?”

Josh nodded yes.

–Beth Alison Maloney, Saving Sammy

One thing that is never in doubt during this book is Ms. Maloney’s love for her son. She never gives up on Sammy. She waits patiently through years of treatment. She contemplates institutionalizing Sammy at various points but ultimately bears the responsibility for his care herself at home. She also demonstrates incredible organizational skills when it comes to researching and documenting her son’s illness, including daily diaries of his symptoms, videotapes of his compulsions and records of his medications and doctor’s visits.

This book and Sammy’s story gives us all a lot to think about. What does it mean to be “mentally ill”? What do you do when your heart and personal experience tells you one thing and medical science tells you another? If your child was affected like Sammy, would you try anything possible in your search for an effective therapy? How can we as a society better support the treatment of people affected by mental illnesses? Please share your thoughts in the comments.