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June 28, 2008

Internet Skills-Based Program for Child Anxiety

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Melody Keller, M.A. and Michelle Craske, Ph.D. at the University of California, Los Angeles, are conducting a free on-line child anxiety study.

The purpose of this study is to determine whether anxious children between the ages of 6 – 12 y/o and their mothers can benefit from a Cognitive-Behavioral Skills-Based Program delivered over the Internet.

Eligible mothers and children are randomly assigned to one of two 12-week conditions: an Internet Program condition or a Waitlist condition. People placed in the waitlist condition will be given access to the internet program at the end of the study.

People from across the United States are welcome to join this study.

You do NOT need to come into the research lab. Everything will be conducted online or over the telephone. If you are interested in this study, please call (310) 206-1128 or send an email to: uclachildanxiety@gmail.com.


June 13, 2008

Labels -- Do they limit or expand your child's potential?

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This month on the A Wild Ride Web site we focus on Labels. Mary Scribner offers some excellent strategies for dealing with our children's "labels." Mary also offers these resources:


Article on The Pitfalls of Labeling Children ‘Gifted and Talented’.

Interview with Mel Levine M.D. on labeling children

A collection of articles about the dangers of labeling a child.

A critical evaluation of the Labeling Theory of Mental Illness.

Do you know of other resources? Send them to Elizabeth.

May 21, 2008

Autism Resources

Recently Paul Nyhan, Seattle P-I Reporter, wrote "Parents are Autism's Hidden Victims."

In his article Paul listed several national resources including:
Autism Speaks
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and the Autism Society of America.
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Check out both sites for amazing resources.

May 19, 2008

Autism's Hidden Victims: The Parents

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Your autistic child screams. His screams pierce eardrums and walls. Your neighbors shake their heads and shun you. They call the police and you suffer daily from an "overwhelming sense of powerlessness." Your own health suffers. If you are a parent of an autistic child, you know the feeling.

Recently Paul Nyhan, Seattle P-I Reporter, wrote "Parents are Autism's Hidden Victims." In the article, Paul recognized the plight of the parent with empathy and resources, unlike any other article I have read recently. As one of the members in my support group says "he gets it."

"Children have autism, but parents are often invisible casualties. Their child's disorder ricochets through their lives, breaking up marriages, draining bank accounts and robbing them of sleep. University of Washington researchers found these parents, among all with disabled children, suffer the highest levels of depression and anxiety symptoms, and parenting stress."

Paul's article goes on to cite work at the University of Washington Autism Center.

My life is full right now (translation: I am overwhelmed) but I promise that over the next week, I'll share more resources for parents with autistic children. In the meantime, read Paul's article for reassurance that you are not alone!!

May 13, 2008

Autism Speaks: Family Services 100 Day Kit

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From Mary: This came into my inbox; something parents who are dealing with Autism should know about.

Autism Speaks Unveils 100 Day Kit, A Unique Resource for Parents of Children Newly Diagnosed with Autism

If you or someone you know has recently had a family member diagnosed with Autism, you might find this useful. The advocacy group Autism Speaks just launched a program to get support kits tailored with local information to families with a recent diagnosis of Autism. You can read more about their new 100 Day Kit here.

Visit Autism Speaks for more information.

May 8, 2008

Talking to Kids About Mental Illness

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Reprinted from the American Academy of Child & Adolescent Psychiatry:

Kids are naturally curious and have questions about mental illnesses. Understanding mental illnesses can be challenging for adults as well as for children. Myths, confusion, and misinformation about mental illnesses cause anxiety, create stereotypes, and continue stigma. During the past 50 years, great advances have been made in the areas of diagnosis and treatment of mental illnesses. Parents can help children understand that these are real illnesses that can be treated.

In order for parents to talk with a child about mental illnesses, they must be knowledgeable and reasonably comfortable with the subject. Some parents may have to do a little homework to be better informed. Parents should have a basic understanding and answers to questions such as, what are mental illnesses, who gets them, what causes them, how are diagnoses made, and what treatments are available.

When explaining to a child about how a mental illness affects a person, it may be helpful to make a comparison to a physical illness. For example, many people get sick with a cold or the flu, but only a few get really sick with something serious like pneumonia. People who have a cold are usually able to do their normal activities. However, if they get pneumonia, they will have to take medicine and may have to go to the hospital. Similarly, feelings of sadness, anxiety, worry, irritability, or sleep problems are common for most people. However, when these feelings get very intense, last for a long period of time and begin to interfere with school, work, and relationships, it may be a sign of a mental illness.

Parents should be aware of their child's needs, concerns, knowledge, and experience with mental illnesses. When talking about mental illnesses, parents should:

* communicate in a straightforward manner
* communicate at a level that is appropriate to a child's age and development level
* have the discussion when the child feels safe and comfortable
* watch their child's reaction during the discussion
* slow down or back up if the child becomes confused or looks upset.

Considering these points will help any child to be more relaxed and understand more of the conversation.

Pre-School Age Children
Young children need less information and fewer details because of their more limited ability to understand. Preschool children focus primarily on things they can see, for example, they may have questions about a person who has an unusual physical appearance, or is behaving strangely. They would also be very aware of people who are crying and obviously sad, or yelling and angry.

School-age children
Older children may want more specifics. They may ask more questions, especially about friends or family with emotional or behavioral problems. Their concerns and questions are usually very straightforward. "Why is that person crying? Why does Daddy drink and get so mad? Why is that person talking to herself?" They may worry about their safety or the safety of their family and friends. It is important to answer their questions directly and honestly and to reassure them about their concerns and feelings.

Teenagers
Teenagers are generally capable of handling much more information and asking more specific and difficult questions. Teenagers often talk more openly with their friends and peers than with their parents. As a result, some teens may have already have misinformation about mental illnesses. Teenagers respond more positively to an open dialogue which includes give and take. They are not as open or responsive when a conversation feels one-sided or like a lecture.

Talking to children about mental illnesses can be an opportunity for parents to provide their children with information, support, and guidance. Learning about mental illnesses can lead to improved recognition, earlier treatment, greater understanding and compassion, as well as decreased stigma.

March 30, 2008

Down & Out: One mother's journey through her son's depression -- Part 8

The Future

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My son sits on the leather sofa in the psychiatrist’s office; his long blond hair falls over his eyes. “The better not to see you, my dear.” After five years on medication for anxiety and depression, at the age of 11, Nicholas wants to go off the pills. I want it to be his decision. He feels he no longer needs the medicine. My reaction: I’m not so sure.

That was six months ago. Nicholas’ hair is even longer, but he does not hide behind it. Instead he brushes it from his eyes, tucking it behind his ears.

Without his medication, Nicholas functions better at some times than at others. During these past six months, I started to phone the psychiatrist to say “He needs the medication.” I know the doctor would have replied, “Let’s put him back on Lexapro. “ Or she might have suggested an office visit to include Nicholas in the decision.

But I never made that call. I never even asked him how he felt or whether he wanted to take the medication again. Was I afraid of the answer? Or, were there more positive days than negative ones.

While some days seemed dark, we did not experience another crisis. Yes, there were days when he did not want to go to school. Yes, there were days when he could barely function. Yet this time he did not stay in bed with the covers over his head, unable to communicate. This time he read or worked on an art project. Sometimes he would catch up on some school work. The quiet house seemed to comfort him. There was a promise of “tomorrow will be better.”

Truthfully I still question the wisdom of our decision to go off medication. Recent news makes me doubt myself even more. “New government figures show a surprising increase in youth suicides after a decade of decline, and some mental health experts think a drop in use of antidepressant drugs may be to blame” reported The New York Times.

New events in Nicholas’ life give me hope for his future. Last Saturday I took Nicholas to play with his friend Rich. Two other good buddies, Austin and Chris, were there too. The three boys met Nicolas at the road, long before I found the driveway. They were waiting, waiting enthusiastically for Nicholas to join them. He leapt from the car as soon as I slowed down. Together the four of them ran back to Rich’s house, my son’s long blond hair flapping behind him, his bright orange sweatshirt standing out in the winter gray. I’ve never seen him happier.
Encouraged by the sight of my cheerful boy, I thought of other ways Nicholas’ life had changed for the better. Some of the therapies that were disastrous in his early childhood now had a place on his list of “things I can do when I’m down.” Together with a friend we assembled a happy photo album that included pictures of Nicholas smiling as a baby in my arms, learning to ride his new bike, enjoying the London Eye with his Aunt Mary, laughing with his cousins. Gone were the photos that made him sad, photos of his dead grandparents that pained him because he no longer remembered them.

He now enjoys massage. No oil please. The deeper the massage the better and a half hour is plenty. Thank you very much.

He no longer goes to his therapist though he continues a positive relationship with him. Nicholas knows he can talk to him at any time. Talking is still not first on his list of ways to comfort myself. His articulate, though word-conservative, nature affords him the opportunity to be understood however. During the recent power outage, he clearly felt blue, always looking for ways to leave the dark house. When I asked him why the house bothered him during the day when it was fairly light, he simply replied, “The house is droopy.”

Though Nicholas would be the last to admit it, music is an important part of his life. He sits at the piano, playing with the keys, teaching himself a new song, practicing something old. Pachelbel Canon in D filled the house after his rat died. Lost in the sounds of the piano, Nicholas feels the music as he plays. The deeper the song, the stronger the notes, the more Nicholas responds.

He still misses more school days than I would like, but he’s able to complete the assignments on time. His relationships with his peers are strong, no longer impaired. His self-esteem is low, but now he realizes his accomplishments and often sees the connection between hard work and results. And he enjoys the pride that comes with a job well done.

I sense that sleep will always be an issue. Many mornings Nicholas rises without benefit of restful sleep. But the dramatic mood swings have lessened in intensity and frequency.
He no longer suffers severe separation anxiety when I leave the room, yet he asks me to read to him at bedtime. Part of me feels he’s too old for this but part of me knows that this will not last forever. The connection we feel during this time is strong and comforting to both of us.
I’ve changed too. I no longer pamper Nicholas. I used to do so much in an effort to diminish his upset and sad moods. Now he packs his own lunch (unless I have the time) and empties the dishwasher (unless he’s running late) and he’s capable of making his own breakfast (but I prefer to make it for him). Did I say I no longer pamper him?

No, really, I have changed. I used to worry about his future. I told everyone who would listen about his depression. I thought that if more people who cared about Nicholas knew that he struggled, we would collectively have a chance to spot any desperate or despondent behavior before a crisis, especially during adolescence.

I worried he would refuse to go to school – permanently. I feared that he would barricade himself in his room, that he would have no friends. I worried that he would become a hermit. Would my troubled adult son cut off communication with his family?

I knew that Nicholas was highly intelligent, and when he was younger I would say, “He’ll either be awarded the Nobel Prize for Physics or be incarcerated.” I no longer feel he will be incarcerated.

My hope for the future? I hope that Nicholas finds his passion. I hope he finds pure joy through that passion and a resiliency if the joy turns to frustration. I hope that he has dreams he attempts to fulfill. I hope that he finds someone to love him and all his quirkiness.

Years from now, I hope he remembers a mother who saw her child struggling and did everything in her power to help him. May he remember a mother whose sometime misguided attempts at helping him feel better came from love.

I doubt that his darkest moments are behind him. But I hope that Nicholas now sees life as one where dark holes are illuminated and people care about him. I hope he realizes that the people I brought into his life, Dr. Thurber, Ben Silverman, the naturopath, the massage therapist, the piano teacher, the soccer coach, the private school teachers, were there to provide a foundation for an optimistic future.

And finally, I hope that, should he find the need for medication later in his life, he realizes there is no shame attached to the decision and that there is only strength in asking for help.

Click here to read the entire Down & Out series.

March 28, 2008

Down and Out: The story of one mother’s journey -- Part 7

Who’s Taking Care of Mom?

As a new stay-at-home mom, I received invitations for playgroups and lunch, for trips to the swings and strolls through the park. I bought a baby jogger and joined a moms group sponsored by a local church. Eager for adult social interaction and opportunities for Nicholas to enjoy babyhood, I accepted invitations and attended meetings.

The moment we walked into a new environment with its bright lights and high energy or its subdued lighting and hushed voices, Nicholas would whimper. At first, I carried on my conversation, trying my best to comfort him. Finally his screams reached a crescendo and I could no longer hear or talk. We left most playgroups before they even started.

Meetings at the church were worse. They arranged for child care so the moms could enjoy refreshments, a speaker, and social time. Margaret, a grandmotherly woman in charge of the infants, reassured me as she took Nicholas in her arms. Without a word exchanged between us, Margaret smiled knowingly. “Ah, time to enjoy the company of other moms,” I thought as I hurried to see my friends. But it was not to be. Within the hour, Margaret found me in the meeting hall, motioned with a nod, and we stepped outside. “I’m very sorry. He’s just not consolable.”

I became the quintessential stay-at-home mom. I left my house only when necessary to take my other son to school or my mom to the doctor’s. I welcomed a trip to the dentist for an hour in a comfortable chair. All they asked was – Open wide.

My husband and I set dates for dinner and the theatre. I enjoyed these stolen moments with my husband but paid dearly the next day when Nicholas became ill after a night of anxiety.
“You should go out more, not less,” suggested the therapist. (Yeah, well, you’re not the one who deals with the aftermath!)

“What he needs is more disciplined,” offered a family member. (Let the beatings begin!)

“I think Nicholas’ problem is his mother,” one doctor noted to the therapist. (Who asked you?)

I began to question myself. Maybe this doctor was right. Maybe Nicholas’ problem IS his mother. Would someone please show me how to NOT be his problem? What am I to do with this information? What am I doing wrong? Am I doing anything right?

Slowly a depression began to worm its way into my thoughts. Since Nicholas’s birth, I could not recall a day that was not difficult. His baby book showed few “smiling child” snapshots. Most photos were images of a worried child, a painfully shy child, one who was clearly troubled by everything around him. Photos of me showed a woman in need of sleep, chocolate or a drink. My weight yo-yoed. It looked obvious, at least to me, that five o’clock never came soon enough.

My husband tried to help. His travel schedule translated to “Available only on Weekends.” By Saturday, the Monday To-Do list had tripled in length. Our other son, on his best behavior all week, now wanted transportation to a friend’s house or the soccer game. My mother needed my company for something other than a doctor’s appointment. My body ached regularly; flu-like symptoms became the norm.


At my lowest I met Joan. Joan shared with me that she too had a son who tested her every waking moment. At first I could not relate to her story. Joan’s situation seemed too dissimilar to mine. Her son, Michael, acted aggressively toward other people. Nicholas withdrew into himself. Michael needed many friends. Nicholas wanted limited social interaction – the fewer people the better. Michael was labeled socially deviant and expelled from pre-school. Nicholas didn’t even want to start pre-school.

As we talked, I realized that our boys were similar -- they both fit somewhere between normal and institutional. More importantly I realized that Joan and I were both concerned mothers who shared common feelings of worry, embarrassment, shame, and guilt.

Joan told me that she and a few other women formed a support group for moms of challenging kids. These children shared some similar emotional difficulties or problem behaviors. Some also had a professional diagnosis. But the glue that held the group together was the moms’ need for support and resources.

At first I resisted attending the group. My son’s issues, and how our family dealt with them, were our business – no one else’s. I didn’t want to talk about these troubles with strangers. We already had a good support system and professionals who were helping us understand Nicholas. But what about me? Who was helping me?

During the next year, I would see Joan around town, and each time, she asked about Nicholas with sincere concern and interest. I would roll my eyes and give her a brief update of our constant day-to-day struggles. “Come meet the other moms,” Joan encouraged me.

Finally, the years of dreadful isolation drove me to attend my first group session. Joan introduced me to the other moms – Maria, Alice, Jackie, Margaret, and Tess. I sat comfortably on the sofa while the others sat in the surrounding overstuffed chairs, all eyes looking at me, welcoming, both curious and respectful. I could talk in my own time and so I just listened. I listened to their stories and struggles, their dreams and hopes for themselves and their children.

“So did you learn anything new?” my husband asked as I came through the door.

“Yes.” I replied. “I learned that I’m not alone.”

Read more about forming a Support Group on A Wild Ride.

Part 8: The Future
Read the beginning of the series:Read Part One, Part Two, Part Three, Part Four, Part Five, Part Six.

See this speaker at Momference now!


March 26, 2008

Down and Out: The story of one mother’s journey -- Part 6

The Paxil Problem and Other Therapy Solutions

“I’m taking all my pediatric patients off Paxil,” Dr. Thornton phoned to tell me on an otherwise sunny day in April. “I just read a British study that said children should not take Paxil because of a possible increase suicidal risk. The study showed that this risk occurred early in the treatment. That suggests to me that there were suicidal tendencies before the Paxil. The FDA plans to conduct their own study, but I don’t want to wait for their research which may take years.”

While the study did not take years, only months, its findings were the same:
“The Food and Drug Administration issued a warning in October 2004 that antidepressant medications, including SSRIs, may increase suicidal ideation and suicidal behaviors in a small number of children and adolescents. Analyses of the studies showed that the average risk of suicidal ideation and suicidal behaviors occurred in 4% of patients treated with an antidepressant, compared to 2% of patients who were treated with a placebo (sugar pill). No suicides occurred in any of the studies,” wrote the National Institute of Mental Health.

Paxil, while never the perfect pill, kept a lid on Nicholas’ anxieties and depression. Off the Paxil, he faced increased tics and more bouts with depression that left him unable to face the day. He constantly rubbed his month, leaving sores, cracked and bleeding. The dark circles under his eyes gave him an almost ghoulish appearance. Back on the Remeron he went, and Dr. Thornton introduced a new medication: Lexapro.

We’ll try it. We’ll try anything. I desperately wanted my son’s dark moods to go away. I didn’t want Nicholas to question why he was alive. Not at this age, not at any age. At nine years old, Nicholas held the weight of the world on his shoulders. Television news became an obsession unless we hid the television. The sight of a passing ambulance, its lights flashing, would raise disturbing questions. Trips to Seattle meant handing out dollar bills to every street person along our route…and more unsettling questions. A bad day at the office meant we too were not far from the streets.

Few people understood our situation. Few people saw what we saw, a troubled young boy, his tortured mind revealed only in school photos or in the safety of his own home.

Perhaps it was the new medication or maybe it was a new level of maturity, but whatever the root, Nicholas seemed open to trying a new therapist. He still had little to say but was willing to sit in yet another office. “I’m sad Mom, but I don’t know why,” he whispered as we drove to his first session with Ben Silverman.

When I interviewed Ben for the roll of therapist in my son’s life, he explained the term Cognitive-Behavioral Therapy. “Cognitive-behavioral therapy is based on the scientific fact that our thoughts cause our feelings and behaviors, not other people, situations, or events.”
He must have seen me flinch because he went on to say, “Nicholas does also have a chemical imbalance that you’ve addressed through medication. But you don’t want him to be on medication his whole life do you? What kind of message are you sending him if the only relief he feels is when he pops a pill?”

“Okay, you have my attention.”

“Look, Nicholas is a very bright boy. Too bright which is probably a major part of his problem. He thinks too much. Unfortunately he thinks about the wrong things. That’s why we need to help him shift his thinking.”

I looked Ben in the eye, “That’s what other therapists said but he never established a relationship with any of them and there was never a sense of trust.”

“With cognitive therapy it’s not about the relationship between the therapist and the client. That’s important of course. But the focus of this type of therapy is teaching self-counseling skills. I’m not going to tell him how he should feel. Yes, he’s an otherwise healthy young boy, and you and I both think he should feel happy and carefree, but the reality is that he doesn’t feel that way. Now you’ve added guilt to his list of feelings because he KNOWS you want him to feel happy and he just doesn’t feel that way.”

And so we scheduled weekly sessions. “What happened before your started feeling bad?|” Ben asked Nicholas after several “getting to know you” meetings. When he didn’t answer, Ben went on “What does sad feel like to you?”

This time Nicholas responded, not immediately, only after several minutes of thinking, but finally he replied, “I feel stuck.”

“Do you want to feel this way?”

Nicholas shook his head, “No.”

“Can you think of something that will make you feel better?”

Again Nicholas shook his head.

“May I give you a project for the next time we meet?”

“Okay,” Nicholas said reluctantly.

“This isn’t a big school assignment or even an assignment that you HAVE to do. Your mom can help you. At the end of each day, would you write down how you felt that day? Write down what you did – went to school, played soccer, whatever it was. Then write down how you felt afterwards. You know, happy, sad, upset, silly. That’s all there is to it.”

As we left the office, Ben patted me on the back. “You’re doing all the right things for your son. He’ll do well because of you.”

Because of me or in spite of me?

Part Seven: Who’s Taking Care of Mom?

Read the beginning of the series:Read Part One, Part Two, Part Three, Part Four, Part Five.

See this speaker at Momference now!


March 24, 2008

Down & Out: The story of one mother's journey through her son's depression -- Part 5

The Medication Journey Continues

“Imagine walking down a dark, deserted alley late at night,” Dr. Thornton once told me. “Now imagine someone or something suddenly coming up behind you. How would you feel? What kind of physical sensations would you have? Well, that is how your son feels all the time. This type of anxious suffering often leads to depression.”

And so we began our journey through the medicine maze. While I always considered medicine a science, I soon realized that it was an art form, especially when it came to treating children with adult medications.

At first Valium provided the calm to help Nicholas sleep. This calmness translated into stillness during the day as well, a feeling at first welcomed then questioned. Nicholas no longer seemed driven to do well at school. What was once a need for perfectionism became a blasé approach to class work. No longer did he keep himself fastidiously clean due to his obsessive compulsive nature. Now he required reminding to wash his hair, change his clothes, and brush his teeth.

“This should take the edge off,” Dr. Thornton told us when she first prescribed the medication. That “edge” had a purpose I realized. I began to wonder if this was the right approach.

A month before our next appointment with Dr. Thornton, when I intended to discuss my concerns, the positive effects of the prescription wore off. The calm no longer lasted, not even through the night. The dose was increased and then increased again. Both times the Valium would return Nicholas to a state of controlled quiet for two weeks, then abruptly end, having no effect at all.

I was convinced that if only my son slept through the night, if only his anxieties did not force him to toss and turn or wake up screaming from a night terror, all his troubles would end. I envisioned a Nicholas who enjoyed learning at school and showed pleasure when a friend wanted to play. I held this theory: Because he suffered sleepless nights, he held no reserves to function happily during the day.

“Let’s try another avenue.” Dr. Thornton offered. “I understand your concern and you are right. Quality sleep is key when dealing with stressful situations. Your son is handling many different issues; anxiety is only one of them. Are you willing to try another medication?”

“Such as?”

“Such as Trazodone. Trazodone is used to treat depression and to help a patient sleep. It is in a class of medications called Serotonin Modulators. It works by increasing the amount of serotonin, a natural substance in the brain that helps maintain mental balance.”

This time the effect lasted longer, but not without end. After six months on Trazodone, with an occasional need for Valium and little improvement, the doctor offered another medication: Remeron. Again, she cautioned us not to expect immediate results. It took weeks before we would notice the effects of this medication.

At each visit, Dr. Thornton discussed openly that the medications she prescribed for Nicholas did not have benefit of clinical trials, as few parents would subject their child to such testing. With Remeron he may have an allergic reaction such as swelling of the lips, face or tongue. He may have difficulty breathing or flu-like symptoms.

“If any of these occur, stop giving him the medication and call me immediately. You should know that other less serious side effects may occur such as nausea, increase in appetite, dizziness, dry mouth or constipation. Let me know if he has problems like these but don’t take him off the meds until we talk.”

Our journey continued. When the Remeron didn’t work, he tried Wellbutrin. On this medication, Nicholas suffered severe headaches, acted agitated, and slept even less. Dr. Thornton reacted promptly, suggesting Clonidine, an anti-hypertensive medication used to treat high blood pressure but recently prescribed for insomnia. This time the nausea was intolerable.

He tried Zoloft, an FDA approved drug used to treat depression, social anxiety disorder, Posttraumatic Traumatic Stress Disorder (PTSD), panic disorder, Obsessive-Compulsive Disorder (OCD). On Zoloft Nicholas slept well at night but was unable to shake the drowsiness until noon each day, and the hard candy Nicholas sucked to relieve dry mouth could easily become a dental nightmare. The only upside to Zoloft was that it was approved for OCD in children and adolescents age 6-17 years, but OCD was not Nicholas’ main problem.

Finally, Dr. Thornton suggested an antidepressant called Paxil, another Selective Serotonin Reuptake Inhibitor (SSRI). Paxil seemed the perfect solution. Improvement was gradual yet steady. We thought we found our magic pill.

Part Six: The Paxil Problem and Other Therapy Solutions

Read the beginning of the series:Read Part One, Part Two, Part Three, Part Four.

See this speaker at Momference now!


March 21, 2008

Down and Out: The story of one mother’s journey through her son’s depression -- Part 4

Medication

Once again I write to Dr. Thornton before our next visit and I tell her: “His negative disposition is still difficult to turn around. If I can encourage Nicholas to participate in some physical activity, releasing those endorphins, he can usually work his way out of a bad mood. I say ‘usually’ because sometimes he seems so down that he cannot entertain the thought of moving from one place to another, especially not in an energetic way.

What I don’t say in my note to the doctor is that I am profoundly saddened when Nicholas uses negative self-talk, describing himself as “stupid” or “bad.” Sometimes this talk becomes even more troubling and morbid. Perhaps my own hyper-sensitivity towards deprecating self-talk plays an overwhelming role in my concern, and I suffer my own form of depression. My father was an alcoholic most of his adult life. He often called my sister and me “stupid” or worse “stupid-idiot.” I hated these labels but had enough self-esteem to ignore the hurtful words. My sister was too little to dodge the verbal bullets. I vowed that, if ever I had children, I would never call them degrading names. I never have. But Nicholas acts as if he is emotionally or physically abused and that is so far from the truth.

As Nicholas and I sit in Dr. Thornton’s office, he curls up in my lap and falls asleep, leaving me free to describe the current situation without disturbing him.

“We saw the therapist you recommended. Dr. James taught him to meditate last month and sometimes that helps. It is true that Nicholas stopped rubbing his mouth or scratching his head lately. No new sores. But now he has uncontrollable blinking episodes. When I ask him if he can stop blinking, he says ‘I can’t. I’m not doing it on purpose Mom, and it doesn’t hurt.” Yesterday, during one of the “blinking” episodes, I asked him if something worried him. “No,” he replied.

So… is this his problem or mine?

But I worry about next week. Nicholas starts at a new school. He is familiar with the school. We’ve spent many hours with him there, getting to know the teachers, the classrooms. He already knows some of the students. The classes are small. The room quiet. Seems like the perfect school setting for my son.

Dr. Thornton acknowledges my concern. “I believe I mentioned to you before that Nicholas may be the perfect candidate for homeschooling.” I wince. He may be the “perfect candidate” but I’m not. When I don’t respond, Dr. Thornton continues: “Usually I don’t like to start school-age patients on medication without a long lead time for assimilation. In this case, I may need to make an exception. I have watched you in my office for a couple of years now. I know you do not take this next step lightly. Are you willing to try medication at this point?”

Deep breath. “What are my options?”

Now it’s Dr. Thornton’s turn to take a deep breath. “First you must understand that according to the National Institute of Mental Health research, depression in children and adolescents is treatable. Some antidepressant medications, called Selective Serotonin Reuptake Inhibitors (SSRIs), are often beneficial to children and adolescents. But, and this is a big BUT, our knowledge of antidepressant treatments in youth, especially someone as young as Nicholas, is very limited. I would like to start him on a small course of Valium at night to help him sleep and to see how he handles medication. Valium is not an SSRI. It is an anti-anxiety medication that is often given to infants in the hospital so we know that it is safe. Are you willing to start here?”

I look at my son asleep. Unable to cope, he always shuts down.

“Yes,” I say, not sure what door I have opened.

Dr. Thornton writes the prescription. “Give this to Nicholas at bedtime and exactly as I prescribed.”

After the initial shock and numbness wears off, I realize that I never asked the important questions: Are there side effects? What do I do if he develops any? Will Nicholas become addicted? How long before we notice the effects of the medication? How long will he need to be on the medication?

Selfishly I fill the prescription without ever asking these questions. After more than five years of sleep deprivation and worry, I am willing to proceed almost blindly to help my son and our family.

Part Five: The Medication Journey Continues

Read Part One, Part Two, Part Three, Part Four.


March 19, 2008

Down and Out: The story of one mother’s journey through her son’s depression -- Part 3

Alternative Therapies

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Over the next year, little changed for my son. Most days I researched alternative therapies and drove to faraway places, searching for the elusive solution. Every other month, I typed out my concerns and provided them to Dr. Thornton prior to our appointment. There is something uncomfortable about speaking to the doctor in front of Nicholas. I often feel as if I am tattling. And so I write:

“Nicholas:

1. Continues to suffer sleep problems (has not slept through the night for more than a week his entire life!). Has extreme fear of the dark. Uses multiple night lights. We have a dream catcher for his nightmares. His lack of sleep dramatically affects his mood and ability to function normally during the day.

2. Suffers severe separation anxiety even when I just leave the room.

3. Exhibits extreme responses to reprimands and near accidents. Demonstrates a fear of failing. Dramatic mood swings. Blames everyone else. When he does accept responsibility for a mistake, he agonizes excessively over this “wrongdoing.”

4. Is constantly negative.

5. Has a scaly, itchy rash on neck, back and shoulders. Will not allow cream to be used.

6. Constantly rubs his mouth with his arm. Has chapped lips. Sometimes they bleed. Will not allow cream. (I try putting cream on him while he is asleep but he wakes up.)

7. Most activities are boring or upsetting, such as going to school. Likes playing on the computer but can react with great upset when told he must stop.

8. Likes being outdoors most but does not like to be cold …or to sweat.
If only he would get a good night’s sleep, I tell the doctor. If only I could get a good night’s sleep, I think to myself.

“Have you tried Benadryl to help him sleep?"

“He became hyper-active.”

“Have you tried Melatonin?”

“Worked for two weeks and then nothing.”

“Have you tried white noise?”

“He hated the soft sound. I returned the machine to the store.”

“Have you tried making his room colder or warmer?”

“Yes, and I have changed his mattress and the mattress cover, added a foam ‘guaranteed to help you sleep’ cushion.”

“Have you tried pet therapy?”

“Okay, you got me there.”

I always thought of myself as a mother who would do anything for her child. Anything, that is except get a dog. When he looks back on his childhood, will Nicholas blame me for his troubles. “After all, if only Mom bought me a dog…. But she didn’t. I got a pet rat instead.”
Aside from pet therapy, we tried every imaginable therapy suggested by our various doctors and those suggested by well-meaning friends.

Talk therapy: At first, Nicholas said nothing. “Nothing” progressed to one-word-responses, then to as few words as possible, until finally he became a master at “Replies Your Therapist Most Wants to Hear.” The Problem: The therapist believed every word of it.

Naturopath: The naturopath eliminated dairy and fruit from Nicholas’ diet. The BIG Problem: After two weeks he was constipated.

Massage therapy. The Problem: The light touch sent him through the roof.

Biofeedback: The Problem: The goop in his hair was enough to cause even more stress.

Another idea: A friend of a friend of a friend had little white pills of unknown origin that worked for her granddaughter, so we tried them. The Problem: What was I thinking!

Emersion therapy: We went to crowded theatres where he cried because there were too many people and too many different smells and sounds.

Aversion therapy: We didn’t go anywhere or interact with other people and I cried!

I didn’t know this then, but some of these alternatives would work well for Nicholas later in his life, but, nothing seemed to help in his early childhood. I came to the conclusion that on a good day Nicholas thinks the “glass is half full.” On a bad day, he thinks that not only is the “glass half empty” but it is also dirty, chipped, and he just knows that it’s going to break and that it will be all his fault!

This week he started compulsive blinking! Where do we go from here? Is medication the only alternative?

Read Part One, Part Two, Part Three.

Next: Part Four: Medication

March 17, 2008

Down and Out: The story of one mother’s journey through her son’s depression -- Part 2

Diagnosis

The drive to Bellevue discouraged me at first. A fifty minute appointment with Dr. Thornton, a pediatric psychiatrist, required four hours of travel time. She shared an office with Mental Health Northwest, and despite its posh address, the clinic was simply furnished with a few comfortable chairs, a child-size table, plastic toys and a few books, all placed on a brightly colored rug. Posters on the wall notified those in the waiting room of suicide prevention phone numbers and classes for those caring for loved ones with bipolar disorder, a not-so-subtle reminder that we were not there for a play date.

How do I define a “good” psychiatrist? When do I know I have the best for my son? What do psychiatrists “do” anyway? Is it really necessary to drive all the way to the Eastside for this particular pediatric psychologist? I rationalized the commute with the fact that Dr. Thornton was considered the best child psychologist by our respected pediatrician.

In the waiting room, Nicholas climbed onto my lap. We read several of the books in the children’s corner. I felt his need to sit as close to me as possible. He would happily meld his body with mine, his anxieties heightening the longer we waited.

When Dr. Thornton called us in, I smiled at her appearance. She was my age, wore glasses, no make-up and dressed rather frumpy, yet she looked comfortable, both wise and kind. She reminded me of a much beloved school teacher, but her first attempt to talk with Nicholas forced him to bury his head in my lap.

As the doctor and I discussed our situation, it was clear that quality sleep could be the key to progress, both Nicholas’ and mine. But there were other issues as well. Weren’t four-year-old boys supposed to be cheerful? Why was he sad all the time? He rarely smiled. He avoided social situations. Music seemed to soothe him, but it could also irritate him. I talked freely and was able to catch a glimpse of Dr. Thornton’s notes: “Lay on mother’s lap throughout session. Refused to come in alone. No eye contact. No spontaneous speech. Closed eyes, sucked thumb, and held onto blanket throughout session. Folded into fetal position whenever mother or I tried to engage him.”

After the evaluation, Dr. Thornton offered, “I have never prescribed medication at this young age and I am reluctant to do it now. Perhaps we could give him something to sleep, but even those medications make me nervous. Let’s monitor him closely for a few months.”

Throughout the spring and summer, we made the journey to the Eastside. Ultimately Dr. Thornton concluded that Nicholas suffered from General Anxiety Disorder, Separation Anxiety Disorder, Nightmare Disorder, Obsessive Compulsive Traits, Sensory Integration Disorder and was possibly lactose intolerant!

Whoa! What am I supposed to do with all this information? What, for example, is General Anxiety Disorder? Dr. Thornton explained that children with GAD engage in extreme, unrealistic worry about everyday life activities. They worry about everything from school work to sports games or the fact that they might be late or make a mistake. I know that Nicholas often feels self-conscious and tense. He needs constant reassurance. He worries about, well, everything.

Though Nicholas was one of the youngest cases Dr. Thornton experienced in her practice, she explained that General Anxiety Disorder was more prevalent among children than I imagined. According to the pamphlet she gave me, if not treated early, anxiety disorders can lead to:

• Repeated school absences or an inability to finish school;
• Impaired relations with peers;
• Low self-esteem;
• Alcohol or other drug use;
• Problems adjusting to work situations; and
• Anxiety disorder in adulthood.

“And there is actually one more possibility,” Dr. Thornton adds. “He may suffer from depression. He’s still young, only four-years-old. But he doesn't even know what calm feels like and at some point we may want to consider medication.”

Now I’m depressed.

“Are you willing to try alternative therapies?” Dr. Thornton asks.

Tomorrow Part Three: Alternative Therapies

To read Part One, click here.

March 15, 2008

Down and Out: The story of one mother’s journey through her son’s depression (by Sarah)

Part One: Pre-diagnosis

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My son sits on the leather sofa in the psychiatrist’s office; his long blond hair falls over his eyes. “The better not to see you, my dear.” After five years on medication for anxiety and depression, at the age of 11, Nicholas wants to go off the pills. I want it to be his decision. He dislikes traveling the distance to the doctor’s office for quarterly check-ups, and he feels he no longer needs the medicine. My reaction: I’m not so sure.

The journey to today took almost nine years -- nine years since his pediatrician ruled out any physiological cause to Nicholas’s problems. The journey took even longer if you consider that Nicholas’s symptoms began at birth.

He cried. Oh, how my baby cried. Nicholas had acid reflux from the moment he began to nurse. I walked the dark halls of our home at night, holding my baby close. I could tell that every swallow was a struggle. Pediatric medications did little to relieve his suffering. At three weeks, Nicholas took an adult medication -- Zantac. I was uncomfortable with the dosage, but nothing else worked.

The adorable child I longed to stay home with, care for, adore, and most of all, touch, continued to cry however. I held him close, inhaling his sweet baby smell, but my light touch caused him great physical discomfort. A kiss on the cheek could send him into a neurological tizzy. I paced with him, whispering soothing words. I rocked him in an infant swing. He cried when I picked him up; he cried louder when I put him down. He seemed in constant pain. Babysitters came and went. Riding in our car only aggravated him. On rare occasions when he fell asleep in the car, I prayed for red lights to turn green. I displayed the sign “Baby on Board.” After all, it was my responsibility to warn other drivers that I would do everything in my power, including driving erratically, to give my son a few moments of restorative sleep. Precious sleep.

As Nicholas grew, he registered his dislike for unfamiliar places by becoming irritable and defiant. We joined playgroups, gym classes, swimming lessons and music programs. We were lucky if we lasted ten minutes. First he moved as far away from the other children as possible, then his body turned rigid. We were always the first to arrive and the first to leave.

“Anna wants to invite Nicholas to her birthday party at the pool,” one mom told me. I cringed at the offer. Birthday parties, we learned early on, were dreadful activities best left unexplored. I wanted to say, “Nicholas hates the sugary cakes and the incessant noise of the other children. If you are planning to play any games, you need to know that if someone accidentally touches him, he may go ballistic.” Instead I said “Sure. He’d love to come” and then I lived to regret it. Finally I learned to fib, “Sorry, we’re busy that day.” No hurt feelings OR explosive meltdowns. I’m not a liar, just a mom.

As he grew older, every fresh situation brought new levels of anxiety and complaints of physical ailments, headaches, stomachaches, exhaustion. I continued to search for underlying causes, but I believed that, for Nicholas, sleep held the key. Each night Nicholas would finally doze off after six books, two glasses of water, a half-hour of cuddle time (being held just a certain way) and assurances that there were no monsters in the closet or under the bed. During the winter months, I lived in fear that the howling wind would cause a power outage. I knew that the silence from a power failure would be deafening and the loss of electricity would stop the gentle hum of the refrigerator – the only sound that soothed Nicholas as he slept.

“Mommy, can we get up now?” I often heard Nicholas call from the bottom of the stairs. Four a.m. is NOT a good time to get up at any age, so I picked him up and carried him back to bed. “No, it’s time for sleep.” “Will you lay down with me?” “For three minutes,” I told him, not wanting to create a dependence on me for his middle of the night comfort. I watched as three minutes passed on the clock. Then I trudged back up the stairs to my own bed.

“Why don’t you just…?” “Have you tried…?” “Don’t you think he’ll outgrow…? Unsolicited advice became an occupational hazard as well-meaning friends and family members offered their interpretations of our situation. I explored every remedy suggested. We visited a naturopath who eliminated dairy but added acidophilus and melatonin. We traveled several hours to a world-renowned homeopath who handed us tiny white pills of unknown origin for the frequent stomachaches. But, the homeopath informed me, “There is nothing I can do for Nicholas’ inability to sleep.”

As Nicholas’s nights grew even shorter, his behavior became more erratic, and his mood sadder. I slowly, but intuitively, realized that he needed psychiatric help. And seven years ago, at the age of four, with the guidance of our pediatrician, we found the perfect doctor for our situation.

Monday: Part Two: Diagnosis
Series originally printed in The Buzz.

March 1, 2008

Does your child or teen suffer from depression?

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The NYU Child Study Center recently updated their site AboutOurKids.org. This is a site that Mary and I often use as a resource.

One of their new entries is on childhood depression. If you are a frequent reader of A Wild Ride you know that we are always looking for good resources on childhood depression. We know that many parents struggle with this topic, so I thought I would share an excerpt of this article with you. To read the entire article visit the NYU site.

Depression in Children and Teens

Everyone feels sad or blue from time to time, both children and adults. When sad feelings significantly impair or affect a child's functioning and persist for more than two weeks, a diagnosis of depression may be appropriate. In addition to the distress it causes to a child, depression can have a dramatic effect on all parts of his or her life, inhibiting social, emotional and educational development. A child with undetected or untreated depression is at risk for:

Poor school attendance and academic performance
Problems such as anxiety
Drug or alcohol abuse
Depression in adulthood
Suicide

Fortunately, depression is one of the most easily and successfully treated mental illnesses. Treatment can include medication and psychotherapy, which can be equally effective; one or both can be chosen as treatment options.


November 28, 2007

What is Fragile X Syndrome?

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According to the Web site for Children's Hospital Boston: "Fragile X syndrome (FXS) is a hereditary condition that can cause learning and behavioral problems in both males and females. It is the most common known cause of mental impairment."

The site goes on to say: "Those with fragile X syndrome have certain physical, behavioral and intellectual characteristics seen in both males and females. Not everyone with fragile X syndrome will have all of the mentioned characteristics."

I knew a little about the condition, specifically that it is the most common cause of autism, but I was further enlightened by a mother's Blog: Fragile What!? The ongoing story of a blended family of 6 who happens to live with fragile x syndrome.

Earlier this week, FXSMom, wrote about a boy named Hunter in a piece titled Let's Meet Hunter . If you are wondering if your child suffers from Fragile X Syndrome, visit this entry for the news story and video.

For more information on Fragile X Syndrome, FXSMom lists other resources on the site including:

Conquer Fragile X
The National Fragile X Foundation
The Fragile X Research Foundation

Have some experience with Fragile X Syndrome? We would love to hear from you. Comment below or email me.

(Photo above from The Fragile X Research Foundation Web site.)

September 8, 2007

Reader's Comment on Bipolar Study

Several readers sent comments regarding our story Study Questions Bipolar Diagnoses on the recent Bipolar research. One of the comments came from the author of my-bipolar-blog. This is new site offers some insightful essays. If you ever wonder what goes on in the mind of someone with Bipolar disorder, check out this site.

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From the Welcome page of this site:

This was my outlet when I had problems; I still use it as a form of self-expression today. It's called creative writing. This is one of my favorite subject poems in class. We had to write a poem about the weather.

Forrest Rain

On the window, the rain will clap.
I can smell the pine-tree sap.
I can see all the beautiful green,
when I look through my window screen.
I love the idea of a cleansed world.
My dog sleeps on a quilt curled.
Whenever I see the rain come in,
I know new life will begin.
"I don't want this feeling to ever end."
I say as I curl up beside my best friend.

Other articles of interest from this site: Metaphore of My Struggles and Are Mental Disorders Hereditary?

September 6, 2007

Study Questions Some Bipolar Diagnoses

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This just in from the Associated Press:
Study Questions Some Bipolar Diagnoses By LINDSEY TANNER

CHICAGO -- A new analysis suggests there's been a huge increase in the number of U.S. children diagnosed with bipolar disorder, but experts question whether the surge is real and say some kids have been mislabeled.

Researchers looked at the number of times children under 19 went to the doctor and were diagnosed with or treated for bipolar disorder, also known as manic depression. They found a 40-fold increase, from an estimated 20,000 visits in 1994 to 800,000 in 2003. The jump coincided with children's rising use of antipsychotic medicine.

The numbers echo other estimates suggesting as many as 1 million U.S. children are bipolar, but it remains a controversial diagnosis in children. That's partly because their symptoms often differ from adults', and because most powerful antipsychotic drugs used to treat bipolar disorder were approved for adults and have not been well-studied in children.

Some doctors believe bipolar disorder doesn't occur in children, and until last month there was only one drug approved to treat the illness in kids.

The study's lead author, Dr. Mark Olfson of Columbia University and the New York State Psychiatric Institute, said the results likely reflect over-diagnosis now or under-diagnosis in the past, rather than a true increase. Olfson has received speaking fees from Janssen LP, which makes one of the pediatric bipolar drugs, and has consulted for other makers of psychiatric drugs.

Dr. Sharon Hirsch, a University of Chicago psychiatrist, said that while she is treating increasing numbers of bipolar children, she doubts there's a "vast epidemic." More public awareness about mental illness, spurred partly by heavy marketing of psychiatric drugs, could have contributed to the surge.

And early in the study, a leading manual of psychiatric illnesses expanded criteria for diagnosing bipolar disorder, Olfson noted. Symptoms include extreme mood swings and disruptive behavior. In children, extreme irritability is sometimes the main symptom. It affects more than 5 million adults. The causes are uncertain but the disorder tends to run in families.

Dr. David Fassler, a University of Vermont psychiatry professor, said research suggests that close to half of children thought to be bipolar may be misdiagnosed. He said parents should get a second opinion if they have concerns about a diagnosis or proposed treatment.

"Bipolar disorder is not always easy to recognize in children and adolescents. There's considerable overlap with other conditions, including ADHD, conduct disorder, anxiety disorders and depression," said Fassler, who was not involved in Olfson's study.

Dr. Thomas Insel, director of the National Institute of Mental Health, which partially funded the research, said the study "waves a flag saying we've got to do much, much better in finding ways to validate psychiatric diagnoses in children. This is an area that really needs hard science."

The study appears in the September issue of Archives of General Psychiatry. It follows a report showing a big increase in U.S. children hospitalized with bipolar disorder, from 1.3 per 10,000 in 1996 to 7.3 per 10,000 in 2004, published in June in the journal Biological Psychiatry.

Olfson and colleagues analyzed annual surveys of outpatient visits from the National Center for Health Statistics. Adult visits for bipolar disorder also increased during the study but not as markedly.

Charlie Crow, 13, of Verona, N.J., who was diagnosed with bipolar disorder in 2001, said the results don't surprise him because he knows lots of other kids who are bipolar. When he was first diagnosed at age 7, though, he felt alone and isolated.

He said it helps to know there are other kids like him. "They know how I feel and I know how they feel," he said. His mother, Susan Montanile, said Charlie was a precocious, disobedient and moody 3-year-old. He later had vivid, violent nightmares and violent outbursts in school.

"He would cycle even within 10 minutes, from hysterical giddiness and laughter watching TV" to screaming when she called him for dinner. It was "like walking on eggshells," she said. "You never really knew within a given hour what was going to happen."

Psychiatric medicine has helped, but has also caused weight gain, drowsiness and other side effects.

Montanile worries that the new study might embolden skeptics who blame "bad parenting" and think afflicted children are simply misdiagnosed brats.

A generation ago, bipolar kids were likely mislabeled as simply truants or troublemakers, said Christine Walker, of Winnetka, Ill., whose 7-year-old son, Schuyler, was diagnosed a few years ago.

"This has always existed," Walker said. "It just didn't have a name, it didn't have a face."

Read original article in Archives of General Psychiatry.

In other news, read Schizophrenia Drug for Youths published August 23, 2007 in the New York Times.


June 11, 2007

Sensory Integration (by Mary)

We interrupt our regularly scheduled Monday edition of the Down & Out Series with the following important Blog entry on Sensory Integration. Down & Out will return on Thursday.

I recently read an article published in the New York Times titled The Disorder Is Sensory; the Diagnosis, Elusive by Benedict Carey.

Reading this story stimulated my now fading memories of an anxious and scared 3 year old boy swinging slowly from a suspended spandex sack. Over a year’s time, these and other unique treatments which were aimed at addressing Alex’s tactile sensitivity and vestibular insecurity were part of an Occupational Therapy program to address his complex sensory overload issues. Eventually, these weekly calming and organizing routines helped him to coordinate his movements and cease pushing children away who accidentally brushed up against him. As therapy continued and he improved, I began to understand Alex’s underlying neurological problems and what triggers motivated his behavior.

So, having had that experience, it is easy for me to empathize with those parents -- parents searching for answers to the often confusing puzzle of how to help their struggling children succeed.

I am thankful to A. Jean Ayres and others who continue to advocate for children and parents and bring this disorder into the mainstream. Therapists and researchers have recently petitioned the American Psychiatric Association to acknowledge “Sensory Processing Disorder” as a bonifide diagnosis which would bring official recognition to this disorder. “But many psychiatrists, pediatricians, family doctors, and school officials fear that if validated, sensory processing disorder could become rampant – a vague diagnosis that could stick insurers and strapped school districts with enormous bills for unproven therapies. The decision is not expected for three or four years, but