Peter's Story
Peter, our first child, was born at Chestnut Hill Hospital, Philadephia PA on June 01, 1993 after a prolonged (28 hours) period of labor. As an infant, he was very good natured, and a bit of a clown by age one year. His physical and mental development were normal, meeting all the usual milestones over the next several years. At age 3 months Peter was placed in day care so that his parents, both Ph.D. chemists, could pursue their careers (his mother at a major chemical company and his father at a pharmaceutical firm). Peter was well cared for and very sociable. By age 4 years he was one of the ringleaders of a group of boys at day care who were essentially non-conformists, frequently testing the boundaries of acceptable behaviour without straying quite too far. Peter's sister, Sarah, was born on September 22, 1995. Peter was very pleased to have a little sister and proud of his new role as a big brother.
Kindergarten passed relatively uneventfully, a swirl of birthday parties and such. In first grade it became clear that Peter was not an average student. He was given a Weschler IQ test and scored a composite 141. Subsequent standardized testing in the school district in 2nd and 3rd grades consistently placed him in the top percentile. He found school very boring and sought to create his own methods of doing math and other tasks. He was quite good at solving problems such as those published by the Mensa Society, and although I could often not understand his reasoning, he seemed to arrive at the correct answers. By second grade Peter's behaviour alternated between very inattentive and somewhat disruptive. I recall being surprised that it seemed all the teachers and staff at his school knew me by name though I had not met many of them. Through a series of parent-teacher conferences accomodations were made to keep Peter sufficiently entertained/engaged in class that he finished the year without major incidents. One of Peter's innovations in 1st grade was developing a new running technique (think of Groucho Marx)....this he showcased in the year-end class "Field Day" exercises. He came in a distant last in the 1 mile run.
During the summer between Peter's 1st and 2nd grades, the family moved from Pennsylvannia ( a small town approx. 25 NW of Philadelphia--on the then outer-fringe of suburbia) to northern New Jersey (a well-established town of 15,000 approx. 25 mi W of NYC). In 2nd grade the issue of boredom with school continued to grow, and encompassed the modest homework assignments causing them to become, by 3rd grade, the focus of daily battles pitting Peter against his parents, especially his mother.
During 3rd grade Peter grew increasingly inattentive and disorganized in school and only the lure of special projects in class kept him focused. By this time he also started to gravitate towards playmates younger than himself, and seemed rather immature. He did however develop a special relationship with a girl in his class, and they became almost inseperable for several months walking to and from school together every day, and playing together at various school and after school events.
During this period we introduced Peter to many of the activities available in this fairly affluent town: soccer; baseball; Boy Scouts; roller hockey; etc. His 'inattentiveness' affected his ability to participate in these activities. It was not unusual to see him standing at center field during a soccer game staring off into the distance while the other kids played on. He had however developed a great interest in chess, and spent much time learning to play, largely by studying the books that we provided him. By the middle of 3rd grade we sought (at the urging of school staff) a psychiatrist who diagnosed what we then believed was attention deficit disorder. Dr. A. was a rather annoying character who presented simple observations as though they were great insights. Surprisingly Dr. A. , a self-described child psychiatrist, showed very little inclination to converse with Peter, and spent only a few minutes over the course of several appointments talking to him.
Peter started taking Adderall in the Spring of 2002 and the effect was quite startling.....he abruptly became much more attentive and able to remain focussed on tasks, games etc. Peter entered the NJ State Chess Championships and finished tied for third place in a very competitive field. He was the only unranked player in the final round.
Peter finished the school year in satisfactory shape. Over the summer between 3rd and 4th grades we traveled to Australia to visit various relatives and travel a bit of the country. We withheld the Adderall over the summer and he had a good trip nonetheless.
From the start of 4th grade Peter expressed frustration and boredom with school. The level of 'inattentiveness' resumed its climb despite the Adderall. He became increasingly disconnected socially from his friends, often seemingly unaware of their presence. Homework became very stressful every night with frequent angry outbursts. Since his mother was home much earlier than I most nights, the struggle over homework became her battle. This unfortunately lead to a very antagonistic relationship between Peter and his mom. Some nights I just did his homework for him so he could have a break.
By Christmas vacation (Dec. 2002) Peter was becoming psychotic. He was increasingly absorbed by hallucinations. However we did not recognize the significance of his increasingly peculiar, uncommunicative behaviour. One night Peter and I walked to a store in a snowstorm to buy some milk. Peter walked exceedingly slowly and refused to hasten. On our return from the store I tried dragging him for a few feet to see if he would increase his pace, but he just fell into the snow. At first he seemed to be laughing, but then suddenly burst into a rage, crying that I had hurt him. I was very affected by this incident and knew that something was very wrong with Peter.
Within a few days of this incident I sat on our couch with Peter and asked him what he was thinking about. He replied in a quiet voice that he was thinking about killing his mother.
Peter and Sarah, Jan 2003
It was clear that he immediately needed a competent child psychiatrist, however contacting one was not easy. We had a referral to Dr. T., but she was off on vacation for several weeks. An adult psychiatrist, Dr. R. agreed to see Peter until Dr. T returned from her vacation. Curiously, Dr. R. did not inform us that (unaware to us) there was a child psychiatrist with a practice two floors above his office in a large medical office building. Then followed several weeks of trial and error with stimulants (Adderall/Ritalin). We then started keeping a daily record of Peter's activities and medications.
During the first few visits to Dr. R. , Peter's behaviour was non-psychotic, and he happily sat and played checkers with the doctor in his office (how much did those games cost ?). Once the novelty of the setting wore off (or perhaps his condition had worsened due to the continued dosing with amphetamines ?) Peter began having hallucinations (he described an airplane crashing through the office window) during a visit with Dr. R. At this point Dr. R. gave us a prescription for Risperdal but did not describe the condition as "psychosis". Only when I looked up Risperdal in a medical text did I discover that it was an anti-psychotic. Thus began our life with childhood-onset schizophrenia, although the COS diagnosis was not made for another 10 months after stays at 3 psychiatric hospitals and interactions with dozens of doctors and staff.
Risperdal had little effect on Peter's psychosis (diagnosed at that time as psychosis NOS-not otherwise specified). Nonetheless he remained in his 4th grade class for another three months, but only through the extraordinary efforts of his teacher, a number of staff, and especially the principal. We all believed that if we could help Peter finish 4th grade, then we'd have time to sort out whatever was wrong with him. By this time Peter's behaviour was so affected that with the principal's consent I went into his class one morning and talked with his classmates about his strange behaviour and what they could do to help him. This tatic worked very well, and the children became very protective of him.
During this time Peter's hallucinations seemed to be chiefly involved with "inappropriate" content: vulgar words and sexual matters. These caused him to be frequently staring into space while smiling and talking quietly to himself. During school Peter then made frequent visits to see the staff in the office and chat with whomever was around, usually the nurse, Mrs. H. or the principal, Ms. W. He was permitted to drink CocaCola in the nurse's office to offset the powerful sedative effect of the Risperdal and Haldol he was then taking. In early spring he was suspended from school for asking two girls in the hallway if they wanted to see his "weiner".
Now that Dr. T. had returned from her vacation we took Peter to see her. She tried to converse with him for a few minutes, then emerged from her office and informed us that she could not help him and that he needed to be hospitalized until he was stabilized on medication. The seriousness of his condition was becoming clear to us, but we were not about to place him in a psychiatric hospital at the age of 9. Through my work I had online access to an enormous amount of medical literature and various search engines. Using these resources I found the phone number of a Dr. E. (a clinical professor of child psychiatry) at NY State Psychiatric Institute in NYC. I rang her phone and to my surprise she answered in person. I briefly described Peter's condition and she urged that we bring him in the next day. Dr. E. spent a short t ime talking with Peter, then informed me that he was "seriously ill". She arranged for him to be admitted to the pediatric neurology ward at New York Presbyterian Hospital to be screened for possible "organic" causes of his psychosis. Dr. E. was felt that there was a real likelihood that Peter's illness was a result of some type of infection.
Peter during 12 hr EEG at NY
Presbyterian Hospital, NYC.
Peter stayed at the pediatric neurology ward for a day. One test there involved a spinal tap, a proceedure that was botched by the resident and made much worse by the resident's failure to alert us that post-proceedure care required that Peter remain lying down as much as possible for the next day. The first thing we did upon returning home was to take a long walk around the neighborhood. Shortly after this he developed a fierce headache and began vomiting.....after two days of this he was admitted to the pediatric ward of a local hospital and treated for dehydration. At this point the hospital staff informed us that they could not release Peter to us, but only to a psychiatric hospital for his own safety (and in compliance with NJ state child welfare regulations). He was transferred by ambulance to the children's psychiatric ward at St. Clare's Hospital in Boonton NJ. This marked the begining of Peter's journey through the child psychiatry inpatient maze. When he emerged nearly a year later, he was a very different boy, as was his family.
Shortly after he was admitted to St. Clares we met with the unit psychiatrist, Dr. F. We presented her with several pages of transcribed notes that we had taken over the past two months or so, as well as a summary history. Dr. F. seemed very much in a hurry, and spent a good bit of our visit rummaging through folders and piles of papers on her desk. She rapidly leafed through our notes circling words with a yellow highlighter here and there at the same time she was talking to us. She had already decided Peter was bipolar and really wanted to just quickly inform us of this. Peter would never have been identified as bipolar by anyone who had some familiarity with him. Dr. F. was insistent. We finally agreed to let her add Depakote to Peter's medication, but not make any other changes. Dr. F. then stopped for a moment, looked at my wife who was wiping away a tear from her eye, and said "What are you so upset about ? He just has a little bipolar. We'll have him out of here in two weeks".
Peter spent nearly a month at St. Clares. He quite enjoyed a sense of freedom there. He no longer had to attend school, and little was asked of him. I drove from work every day to see him for a couple of hours. Each day I brought him a cookie or piece of candy. After two weeks all the original children in the ward had left and were replaced by new patients, only Peter remained a long-term resident.
The response of neighbors and friends in our town to Peter's hospitalization was wonderful. For several months people would cook meals and leave them at our front door, usually just stopping for a moment to chat. Friends took care of Peter's sister numerous times, freeing us to go to the hospital. The elementary school principal organized all these meals and play dates, and even took Sarah shopping one day.
We immediately started looking for a new child in-patient psychiatric facility. Even in a densely populated area such as northern New Jersey this was not a simple task. Many for-profit private hospitals had closed their child psych units in recent years, and the remaining ones seemed driven by medical insurance plans that are tuned to 10-14 day stays for child psych patients. We returned to our contacts at New York Psychiatirc Institute, and were able to get Peter transferred from St. Clares to the "prestigious" New York Presbyterian psychiatric hospital in White Plains NY.
Peter remained at the White Plains hospital for 2 months. We were attracted to this hospital because of its proximity to NYC (home to many famous psychiatrists) and because it draws staff from both Columbia and Cornell medical schools. The White Plains psychiatric hospital was described to me by one psychiatrist as "Mecca for psychiatrists in the U.S". In the child psychiatry ward, named Nicols Cottage, Peter was assigned to a Dr. C., a native of Spain. Dr. C. seemed to have a good grasp of psychiatric medicines. Dr. C. immediately started altering Peter's medication to better control his psychosis. We were quite hopeful that the cause of Peter's illness would be identified and corrected. One thing Dr. C. did not have was a good understanding of the language and culture of American children. He was not able to understand much of what Peter told him when they met for therapy sessions. He did understand that Peter constantly expressed views that he believed men to be superior to women, and worse that he harbored homicidal thoughts towards his mother.
Each day after work I drove to White Plains to see Peter for an hour or so, then drove home arriving about 930PM most nights. Curiously, as Peter's psychosis progressed his hand-eye coordination improved remarkably. He became quite adept at juggling 3 balls and spent hours each day doing so.
Peter juggling at Nicols Cottage.
.
Nicols Cottage, the children's ward, was often very noisy so I bought Peter a Walkman radio to distract him.He quickly discovered radio stations in NYC that broadcast hardcore (for a 9 year old) 'gangsta' rap music.After a week, he was listeneing to rap constantly, delighting in songs containing plenty of obsceneties and violence against women. It took a while to wean him from this entertainment. Dr. C. informed me one day that Peter had become attracted to one tall, blonde nurse, and started walking up to her and saying things such as "Your boobs look really nice in that shirt".
It was only a few days after Peter entered the White Plains hospital that it became clear that conditions in the ward were not quite what one would expect in a prestigious place that charged $1,000.00 per day. The noise on the ward was excessive, particularly for a psychotic child. The ward's "quiet room" (a room with padded walls where uncontrollable children were kept until they quieted) was on the same hall with the children's rooms. Any time a child started screaming they were ushered into the quiet room, but the sound of the screaming was still quite loud all along the hallway. This was very upsetting to Peter who had no real idea what was happening around him. Worse yet, the staff, nurses and aides, seemed only to communicate with the patients by screaming at them. Peter was awakened each morning by a shouting staff member. It is incomprehensible to me how they could expect mentally ill children to improve in such a stressful setting. Peter was tried on two other anti-psychotics during this period, but neither was more than marginally effective against his psychosis.
We pressured the staff on the ward about the excesively loud and emotional environment to which they were subjecting the children, but met with a cool professional indifference.....after all who exactly were the experts ?
After a few weeks at White Plains, Peter's doctor felt he was ready to be transferred to a day treatment program. I then drove Peter to Elizabeth NJ for an intake interview for a day program. There we met with Dr. P. and discussed Peter's case for a short time, then Dr. P. interviewed Peter separately for about 10 minutes. Called back into the interview room, I was informed by Dr. P. that Peter was totally unprepared for a day program.....he found that Peter was still very psychotic and had voiced homicidal intentions. We returned to White Plains after stopping at an Outback Steakhouse for a special supper. Peter confessed that he had been told by one of the other patients on his ward that if he just told the doctors and staff that he no longer had hallucinations then he would be able to go home. Peter really wanted to escape the madhouse known as Nicols Cottage. He had decieved two highly trained child psychiatrists and their staff.
After another month at Nicols Cottage, Peter was again declared ready for an outpatient program. Again we traveled to Elizabeth NJ for an interview with Dr. P......and again Peter was found to be homicidal. Dr. P. had filled two legal size pages with notes he had taken while quizzing Peter on how he planned to murder his mother and so forth. We returned to the Outback Steakhouse in White Plains for a special dinner once again before returning to the ward. It was now clear to me that there were some serious communication issues with the staff at Nicols Cottage. Never much of a xenophobe, I now began to think that the staff of non-native-English speaking psychiatrists (I had met no psychiatrists there who were native English speakers) were unable to effectively converse with the patients. In any event the psychiatrists were basically at a loss what to do next.
By this time we were beginning to lose our optimism that some simple explanation would be found for Peter's illness. Dr. E. at NY State Psychiatric Institute had exhausted her battery of tests for possible organic causes of Peter's psychosis. The diagnosis of schizophrenia began looming in our conciousness. I started to search the Internet for resources with expertise in pediatric schizophrenia. I quickly found one option: the National Institute of Mental Health (NIMH) in Bethesda Maryland which had an ongoing clinical study of childhood-onset schizophrenia. I filed the online application form.
Once we had all the paperwork filed with the Child Psychiatry branch at NIMH, we were invited to come for an interview. To our surprise we were flown to Dulles airport by air ambulance at government expense. Peter's mom sat in the co-pilot's seat, and Peter, the air nurse and I were in the passenger area. Peter was belted into a guerney for the flight. He occassionally would crane his neck and reach around to give his mother the finger. He gradually became more agitated as the trip progressed.
Peter with the air ambulance crew and
his mother at Dulles Airport.
Upon our arrival at the Child Psych unit for the interview Peter flew into a rage, knocking over furniture, throwing everything he could lift and jumping onto the conference table screaming and cursing. This cleared the room rather quickly, save for one short woman in a white jacket who sat accross the table observing the commotion. Peter wrestled furiously with me, spitting and attempting to bite me. After a few minutes, he became calm again. Oddly, it then occurred to me that this episode would probably end our chances of getting him into the clinical study. Who would want such a wild, violent child for a clinical study ?
The interview lasted several hours with a break for lunch at the main cafeteria. Peter passed most of the time playing a game on his Gameboy (a new toy for him). We sat at a large conference table surrounded by a team of doctors, nurses and other staff. They reviewed Peter's history in great detail with us. Towards the end of the interview we started to discuss potential diagnoses. When the word schizophrenia was mentioned, Peter abruptly looked up from his Gameboy, accross the table at no one in particular and said in a very clear voice "Schizophrenia ? Does this mean I have schizophrenia ? That means I won't have any life". No one moved....we were all stunned by this statement. The psychiatrists didn't respond to Peter's comment. After a very long pause, the conversation resumed, leaving Peter's question unanswered, but lingering in the air. About 3 PM the interview concluded, and the NIMH clinicians excused themselves for a few minutes of private consultation. Ten minutes later Dr. Gogtay, the lead investigator, returned and informed us that Peter would be accepted into the COS clinical study.
From previous conversations with the NIMH staff we knew that acceptance into the COS study was a giant
step towards the diagnosis we dreaded: the COS clinicians had not rejected any child from the study who was subsequently found to have schizophrenia. They were batting 1000 at this stage. Peter would soon become patient # 76 in a clinical study that had been running for over 10 years. We returned to White Plains NY by air ambulance.
Peter leaving Nichols Cottage on
July 01, 2003 : "This is the
happiest day of my life."
On July 01, 2003 I arrived at Nicols Cottage at 730 AM to take Peter to NIMH/Bethesda. It was quiet, for once, on the ward. None of the doctors was on hand. As we started to walk down the hallway to leave, the kids in residence began coming out of their rooms and saying goodbye to Peter, many giving high fives and saying "We'll miss you buddy", and "You made it Peter !". It was surprising and spontaneous, really quite moving. Just when we reached the locked door at the end of the hallway, one of the most friendly and outgoing of the aides came after us and stopped Peter, hugged him and gave him a dollar bill. We have no idea what significance the dollar has... perhaps its a sort of graduation present. When we exited Nicols Cottage Peter became very cheerful and stopped to tell me "Dad, this is the happiest day of my life".
The air ambulance was waiting at White Plains airport. The same two crew members had returned for this trip at their request, having flown in early in the morning from Pittsburg PA. They gave Peter a hockey jersey that belonged to Mario Lemieux. (One of the crew had close connections with the Pittsburg Penguins hockey team.) Peter had told them about playing roller hockey and watching the New Jersey Devils on tv. He had no idea who Mario Lemieux was, but it didn't matter. We flew to Bethesda chatting about hockey and snacking on a few cookies I had brought. Mother drove in her car with clothes and supplies, prepared to stay there through the summer at the Children's Inn.
TO BE CONTINUED........30 March 2006