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In January of Paul’s first-grade year, following Dr. Denckla’s advice and in conjunction with his teachers and his new pediatrician, Raymond Srsic, we began the process of reducing the Ritalin, ultimately ruling it out altogether. After trying Dexedrine at various dosages without success, I called the Psychopharmacology Clinic at Johns Hopkins Hospital, where we were able to get an appointment with the director, a Dr. Reiss. I had no illusions at this juncture of a quick fix, but I hoped this level of expertise could provide the help Paul desperately needed.
With few exceptions, Paul was still unable to focus well enough to be successful in either large or small groupings. Even though Paul continued to be characterized as cooperative and kind, he was unsure of his place within a group of classmates. In fact, when the children played games, he preferred to sit alone and mostly depended on the teacher for reassurance.
Paul’s writing was weak and labor intensive. I remember a call from his first-grade teacher, telling me he had written his very first sentence in his journal that day.
“What did he write?” I asked.
“I wish it was summer,” she said.
*
THANKFULLY, PAUL WASN’T a self-centered child, and the absence of ego-boosting experiences never caused him to resist going to school. Paul loved his teachers and had developed a close friendship with Scott, a fellow first grader. At home, Paul functioned happily, playing with Keely, his cousins, and a couple of close neighborhood friends.
The only time I saw Paul upset at school was on the day of the first-grade play. Just minutes before it was to start, Paul was told his participation wasn’t needed. Everyone in the class was in the play, and he’d worn the designated outfit to school that day. This news came as a surprise and a blow to him. I learned of this situation just minutes before Paul did and was asked to get him from the wings of the stage, take him back to his classroom, and wait with him until the others returned.
As I intercepted Paul, I could see he was confounded. He ran ahead of me as we crossed the campus, and when we entered his empty classroom, he grabbed a plastic basket full of crayons and threw it to the floor. He sobbed and, in so many words, asked me why he was singled out. I held him and tried to soothe him, but I had no answer. I was careful not to feed his anger, but I was upset too. After his crying subsided, we picked up the crayons and I read a book to him. He never mentioned this incident again.
By March, first grade for Paul had deteriorated entirely due to the instability brought on by switching the various medications (nortriptyline, clonidine, desipramine, imipramine), with each drug generating different effects and the transitioning itself adding to the instability. On one medication, Paul became overly agitated; on another, he couldn’t stay awake. I remember going into our bathroom at home early one morning, thinking I was the only one up, and finding Paul passed out cold on our bathroom floor.
Paul needed routine EKG and blood tests, all of which he stoically tolerated, but he could no longer go to school, and it was obvious he was not remotely prepared for second grade for the upcoming year. Because Paul was already an old first grader, a repeat was out of the question.
I was anxious. I wanted this experimental phase behind us and, frankly, grew impatient with it. At the outset of this trial period, I hoped that by some miracle Paul would get the right treatment, be able to take advantage of his brightness, catch up academically, and end this roller coaster ride. But I knew this was a long shot, and my realism was starting to temper my optimism. My focus was on his fate for the upcoming school year, and I didn’t yet see even a glimmer of light at the end of the tunnel.
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May 27, 1990
Dear Dr. Reiss,
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My son, Paul, is under your care, through his pediatrician, for determining the best possible medication for his attentional impairment.
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As we began to experiment with various medications this spring, Paul initially suffered withdrawal from the stimulants to the point where he was rolling on the floor in his classroom, making high pitched noises, and displaying other disruptive behaviors. Once on a full dose of nortriptyline for the requisite period of time, Paul did present as the happy, well-adjusted child that I had known him to be most of his life. However, his ability to learn (even in a 1:1 setting) was nonexistent.
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Hence we began the clonidine and all of the negative behaviors that accompany any change for this child were evidenced. Whereas I realize it is not possible to avoid the ramifications of weaning from one medication and beginning another, I have never been told what to anticipate, what to tolerate, and when to express concern. Also, I have not been told what length of time is necessary to begin to evaluate any positive effects of these two medications.
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As of today, Paul is on .2 mg of clonidine. Other than the morning nap he needs as a result, he is able to enjoy riding his bike and playing in the afternoon. He cannot, however, do any academic work and is no longer able to attend school. I learned through the pediatrician yesterday that we will proceed in two more increments to .3 mg of clonidine. At that time, I suspect we will rule out the clonidine. I can only guess, however, as to what will be decided and when, and why, and to what end. And each day without success is long and painful. I know this entire process requires patience, yet without a full understanding of the process itself, patience is difficult. Moreover, I am not convinced my patience to date has served my son.
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The bleakness of our current situation contributes to my frustration. I know we are fortunate to have your involvement, yet I feel too removed to feel confident that Paul’s best interest is being served. In short, I am frustrated by the questions I cannot ask, and the input I cannot give.
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Please give me the benefit of your advice.
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Thank you,
Jessie Dunleavy
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I received a reply from Dr. Reiss, encouraging me to persist as long as I felt the “deleterious effects of the medication trials do not outweigh the potential advantages to be gained” and clarifying that he was serving as a consultant to Dr. Srsic, with whom I should share my insights and concerns.
Finally, a medication we tried late that spring, desipramine, seemed to help Paul and he was able to return to school, although there were just a few days left in the year. The teachers reported Paul was more aware of his environment, more outgoing and communicative with his peers, and more focused on completing his work. One day, Paul’s teacher was so excited by his performance that she called me during the school day. Unable to reach me, she asked my administrative assistant to give me this message: “Paul is having the best day ever!”
None of these positives suggested that Paul was functioning well enough to be able to make up for lost time, particularly in short order. Still, I was heartened and extremely relieved that it looked as though we had landed on the right medication.
Within a few days of this respite, I got a call from Dr. Srsic, who told me he had just received the June 1990 issue of The Medical Letter, a bi-weekly journal providing evaluations of pharmaceutical drugs for physicians. Its lead article—Sudden Death in Children Treated with Tricyclic Drugs—concerned him greatly and, as a result, he was unwilling to continue to prescribe desipramine. I couldn’t believe it! I was heartsick. From there, we tried an alternative that supposedly provided similar benefits. This may have been true for some children, but it wasn’t for Paul.
Earlier in the spring, I had started to consider school alternatives for Paul. There weren’t many choices, but I learned a lot about special education resources within a thirty-mile radius of our home. I fell in love with one school I visited in Washington, D.C., but decided our neighborhood public school would be the better