One mother’s battle to save her son from OCD

/ Source: TODAY books

What would you do if your previously normal child suddenly refused to bathe, burst into fits of rage, slithered along walls and wouldn’t walk out the front door? When Beth Maloney was faced with that situation she fought tooth and nail to reclaim her son, taking on members of the medical establishment who were too quick to label and treat him in a way that only made the symptoms worse. “Saving Sammy: Curing the Boy Who Caught OCD” is her account of her remarkable and ultimately triumphant journey. An excerpt.

Chapter four: Diagnosis
On a day in late August when a storm has cleared and a rainbow paints the sky, I grab my paddle and head for the seals. They rest on their backs, their noses poked high, while they float and drift with the tide. Their bellies are full, their whiskers distinguished and dripping beyond their chins. They peer as I pass. Their eyes look like glass, and they stare at me cautiously. The seals all know instinctively what men have learned over time: the best salt-water fishing in Maine comes when August folds into fall.

The striped bass are heading south by then — and so were we.

If the ride up to Limestone was the worst car ride of my life, the trip back was a living hell. Sammy was crunched into the corner of his seat. The clawed thumbs of his empty hands moved back and forth as if he held a Game Boy. His head bobbed with the bumps in the road. I couldn’t tell if his eyes were open or shut. I just knew that he was far away.

My mind was spinning. When did he last eat? Why didn’t I know this? What kind of mother was I? Maybe if I’d served him a decent meal instead of working so hard, none of this would have happened.

“Sammy, should we stop and get something to eat?” I called back periodically to him. He did not give me a response.

“I’m hungry, Mom,” James answered instead.

“Where are those pretzels I brought with us?”

“We ate them,” James answered.

“Are there any apples left?”

“Yes.”

“Eat those.”

I thought about Sammy standing at the table during meal after meal, with his eyes shut. Had he actually eaten? I had been in overdrive for weeks. In addition to the packing, the unpacking, and all the craziness around Sammy, one of my clients was closing a major deal. I had been pushing that deal through night and day. Had I neglected my child because of my work? Was it my fault this had happened?

“Sammy, do you want to stop for food?” I called back again much later. Still no response.

Stress isn’t causing Sammy’s problems! my head and my heart shouted silently together.

It was ten o'clock by the time we got home that night. I readied myself to dash through the woods if he bolted when I parked, but he did not move. I woke James, held his soft cheeks in my hands, and spoke into his ear.

“You are to go directly into the house and up to bed. Do you understand me?” I spoke in a low, commanding-officer kind of voice. “Right into your room and shut your door.”

“But I’m hungry,” James whined softly.

“Get an apple and take it into your room; that’s the best we can do tonight.”

James nodded and headed for the house. I watched James go inside; then I turned to Sammy. He was hunched over into a ball in his seat. He nodded: yes, he would come into the house. He shook his head: no, he would not run away. I followed him around to the back of the house, and we went in. I locked every door, turned on every light, and shut every window. Once confined, I knew, he would not leave, since he would not touch a door handle. I left him on the first floor in the den; then I went up to my office. I called the psychologist’s voice mail and left a detailed message about what had happened.

“This is not stress,” I said through gritted teeth. “There is something medically wrong.” Then I typed a fax to the pediatrician describing what was going on and telling him that I needed a call back first thing in the morning with an appointment time. I noted that we were in an urgent, life-threatening situation and I needed his help.

Then I collapsed on my bed and listened to Sammy pound his way around the house. I called the pediatrician at 9:01 the next morning. The nurse answered. I held while she searched for the fax and went to talk to the doctor; then she came back on and delivered the news.

“The doctor says you should take him to the crisis unit.”

“Are you saying the doctor won’t see my son?” I felt the hairs stand up on the back of my neck.

“He says you should go to the crisis unit,” she repeated.

“I think we have a misunderstanding here,” I said slowly.

“Sammy has been the doctor’s patient for more than five years. He is sick. He needs to see his doctor. We are going to be at the psychologist’s office at three p.m. Right after that, I will walk him over to see the doctor. If four o’clock isn’t good, tell me another time, and we’ll be there.” She put me on hold again; then she came back on the line.

“He says you should take him to the crisis unit,” she repeated once more.

“So you’re saying he refuses to see my son?” I asked, my blood boiling over.

“He thinks you need the crisis unit,” she said.

“Without even seeing him,” I stated.

I had been a guardian ad litem long enough to know that the crisis unit is the last place you take your child. It is absolutely the very last place. You take your child to the crisis unit when you are totally and completely out of options, when you have tried everything else and you have absolutely nowhere else to go. It is the last stop on a dead end. The crisis unit is where I visit the children who are out of control and suicidal or homicidal, the kids who are hallucinating, the kids whose parents have beaten them so badly that they start a fire to burn down the house. It’s where you’ll find the thirteen-year-old girls who have group sex with a dozen grown men because they’ve been molested or abandoned and they feel so lousy about themselves they think maybe this will help. It’s where the kids learn from one another how to cut themselves. My son was not going to the crisis unit. He did not need a holding cell disguised as a hospital. He needed a medical doctor to figure out what was wrong with him, and his own doctor would not see him.

Sammy’s pediatrician was fired the moment he refused to see my son, but I was not going to say that until I had his replacement lined up. “Tell him thanks for me, will you?” I said and hung up the telephone.

Later that day, we went to see the psychologist. Sammy waited skittishly in the lobby while I met with the psychologist. I was dangerously close to screaming that I felt he had wasted our time, but I mustered all of my self-control.

“We’ve got one minute,” I told him, seething, “because he might run away. We’re not waiting any longer to see if he gets better. This isn’t stress. There is something terribly wrong, and I want my kid back. His doctor has refused to see him, and these sessions are doing nothing. Where do we go from here?”

He gave me a list of about a dozen child psychiatrists. “Tell them we need a screen-out for obsessive-compulsive disorder — OCD,” he said.

I went back to the lobby and breathed a sigh of relief, because Sammy was still there. He went into the office. They spoke briefly, and then we went home. I made calls relentlessly to all the doctors on the list. I could not reach any of them. I left messages, and most did not call back. Those who did call — usually days after I had left my urgent message — said it would be about three months before I could get an appointment.

“In three months, he could be dead,” I told one of them.

“And if I did see him,” noted another, “it would only be to give a diagnosis. I don’t do treatment.”

I could not find a single psychiatrist in all of southern Maine who would see my son.

I briefly thought there was hope when Sammy asked one day if there were some type of drink I could get him. He said he couldn’t eat anything, but that a drink made with fruit would be good. Watermelon was his favorite fruit.

“Watermelon in the blender?” I asked excitedly.

“Whatever you want,” he answered as I hurried off to the kitchen.

When I handed him the glass, he held it high in the air.

“To new beginnings,” Sammy said as he chugged it.

I thought that all might be well; maybe he’d eat again. He did not get well; he got worse. He relentlessly rubbed, paced, huffed, puffed, and held his breath. We were not allowed to look at him. One night he caught me watching him. He screamed and cried for an hour. Sometimes at one or two in the morning, Sammy would finally go into his room. On the first night this happened, when he slammed his door and all the sounds stopped, I crept quietly down the stairs. I lay on the floor outside his room, listening for sounds that might mean he was trying to hurt himself.

All was quiet, so I tried to open the door, but it wouldn’t budge. I tried to look under the crack at the bottom of the door, but it was too thin. I went outside and set up a ladder to his second-story window. I could see him on the floor, curled in a fetal position, pushed up against the door. He was breathing.

He was safe. After that, when his door slammed late at night and the sounds quieted, I came downstairs and slept on the floor outside his room.

I sent James to my parents in New Jersey, and I cried all the way home from the airport. I had no choice. I was unable to do anything except try to take care of Sammy. Some nights I would wake from my place on the floor and go lie on James’s bed, sobbing, because I missed him so much. I wanted my baby with me.

I wasted precious days making useless calls to psychiatrists in Maine. I waited for return calls that never came and finally expanded my search to New Hampshire. It was there I found Dr. Drill. His office called me right back, but — once again — there was no availability. In fact, his receptionist explained, he had canceled all his appointments because his wife was overdue with their first child.

“So he has no patients this week?”

“That’s correct,” she answered.

“But he’s in the office?”

“Yes.”

“Suppose we make an appointment and understand that he’ll cancel if she goes into labor? If you call and we’re on our way, we’ll turn back.”

There was silence on the other end of the line.

“Please,” I begged. “My son is desperately ill, and I can’t find anyone in Maine to see him. I’ll pay cash. We can be there on two hours’ notice.”

She hesitated, then said, “Hold on.”

I prayed while I waited, and then she came back on the line.

“Tomorrow at two, but he might have to cancel.”

“I know. Thank you. Thank him for me. Thank you so much.”

The next day we were in Portsmouth, New Hampshire. I watched Sammy in Dr. Drill’s waiting room as he held his ears shut, huffed and puffed, and rubbed his feet back and forth on the rug. His clothes were rumpled and filthy. His eyes were like slits. He hopped. He pounded. He did everything but shriek.

He bore no resemblance whatsoever to the award-winning, kindhearted, brilliant son who had been mine just six weeks before. I did not recognize this child.

“I’m fine,” Sammy sneered at anyone who expressed concern, asking if they could help or get him anything.

I saw the staff whispering. I knew it was about him. The receptionist was so alarmed that she made Dr. Drill begin our appointment early. Sammy snorted and huffed his way from the reception area to Dr. Drill’s office. He scraped his body along the wall. It took him about ten minutes to cover a distance that would usually take less than a minute. Once in the office, Sammy was theoretically “on” the leather couch. In reality: he was squirming, turning sideways, snaking along the cushions, hanging his legs over the back, rubbing his body on the side arms of the couch, squinting his eyes, holding his ears shut, and gasping for breath.

The office had a large desk, Oriental rugs, a leather couch, and two leather chairs that faced the couch. The walls were lined with bookcases full of complicated titles. I sat on one of the leather chairs, trying hard to appear calm and responsible, even though I wanted to scream. The doctor faced us from the other chair. He was trim with dark hair. Dr. Drill may have been the only doctor who would see Sammy, but he had excellent credentials and was extremely well respected. We were in good hands.

“What seems to be the problem, Sammy?” Dr. Drill asked as he watched my son through his black-framed glasses.

Sammy wriggled around violently on the couch. “Why don’t you ask my mother? She’s the one who thinks I need to be here.” He pushed the words out, in the middle of snorting, while he glared at the doctor.

“It started about six weeks ago,” I said quietly, “and here’s what is happening now.” I reached into my bag and retrieved a sheet of typing paper. I had anticipated that this question would come in one form or another. I thought it might be too painful to detail the behaviors in front of Sammy, so I had compiled the long list at home. It included all of the behaviors

I had spoken about with the psychologist and his newest ones, too: scratching and picking at his skin, blowing on his hands, constantly pulling at his clothes as if they were too tight.

“Yesterday,” I added as I handed the list to Dr. Drill, “we had to take all the clocks off the walls and put them in closets because he can’t stand the ticking.”

The doctor and I talked about the list while Sammy, on his back, skidded from one end of the couch to the other. Then the doctor asked Sammy if he had any questions.

“Yes.” He squinted and slithered. “Did you wear a pocket protector in high school?”

“No,” answered Dr. Drill, who seemed somewhat uncomfortable. I sat there and wondered what a pocket protector was.

We sent Sammy out. I knew that because of Sammy’s strange behaviors, it would take him at least ten minutes to reach the reception area; that gave me ten private minutes with the doctor to find out what on earth was wrong with my son. He gave me the diagnosis the psychologist had suspected: obsessive-compulsive disorder, commonly known as OCD.

“His behaviors are compulsions,” the doctor explained. “They are beyond his control.”

“You’re saying he can’t stop himself from doing any of this?” It was a tough concept to register.

“That’s right.” Dr. Drill thumbed the pages of a prescription pad.

The doctor said it had to do with something called serotonin. Sammy’s brain was making serotonin but absorbing it into his system too quickly. He had a chemical imbalance, and medication could help with that. The dose would start small and then increase as his body became able to process the dose more quickly. We wanted the medication to stay in his system and slow things down, so we would periodically increase the dose.

“But where did this come from?” I asked. “Six weeks ago he was fine.”

“Sometimes it happens like that,” the doctor answered, searching for a pen.

“With no family history?” I asked.

“There’s probably an uncle out there, or another relative who was odd, but no one talks about it.” He scribbled on the pad.

“I don’t think so.” I shook my head and carefully searched my memory. It came up blank.

“You’re in for a long haul ahead,” the doctor said and handed me a prescription.

“How long will it take for him to get better?” I fingered the slip of paper on which all our hopes now rested.

He stood up and pulled a videotape from the bookcase behind him, then turned to face me.

“Sometimes the children get better.” He hesitated. “And sometimes they don’t.” He added the last part quietly and proffered the videotape. It was called Understanding Obsessive-Compulsive Disorder.

“Thank you, Doctor.” I took the tape and looked him square in the eyes. “My son will get better.”

Reprinted from “Saving Sammy” by Beth Alison Maloney. Copyright © 2009 Beth Alison Maloney. Published by Crown/Publishers, a division of Random House, Inc.