Pediatric Bipolar Disorder–Ben’s Story by Betty Casey

The day he was born, a nurse brought Sheri and Tom Blaylock’s son Ben back to Sheri’s hospital room. “He can’t stay in the nursery,” the nurse said. “He can’t stop crying.” The second day, a nurse asked, “What are you doing to that baby? He won’t stop crying.” Ben cried for 12 hours at a time. He didn’t sleep through the night until he was over 6 years old, and he suffered from night terrors. “His brain doesn’t shut down like our does,” said Sheri. But it wasn’t just the lack of sleep and the crying that concerned Sheri and Todd. It was Ben’s unusual behavior. “We felt that something was wrong, but out in public, other people didn’t see it,” said Sheri. “He was speaking in complete sentences before he was a year old. His preschool teachers thought he was great, so smart, but by the time I would get him in his carseat, he would literally be pulling his hair out.” While Sheri and Todd struggled to figure out what they were doing wrong, Sheri discovered she was pregnant again and things began to deteriorate further. “Ben was 2 when I got pregnant. When our daughter was born, we realized something was really wrong. Ben was miserable. He wanted to make [his sister] go away. And it was beyond the typically clingy behavior.” Frustrated and exhausted over her inability to handle Ben’s behavior, Sheri told Todd that maybe she needed to leave, believing that she was the problem. Meanwhile, the couple continued to press their pediatrician for answers. Todd said that when Ben was 5 1/2, his pediatrician finally sent him to a psychiatrist, who diagnosed Ben with being depressed and easily overwhelmed. “During that time,” said Todd, “Ben would have rages, jump out of moving cars, scream and cry, bang his head and fists. The rages and crying could last an hour or more. And it could be over good things. One time, we went to a movie and decided to get ice cream afterwards. Ben had a complete meltdown. We thought he was spoiled.” The psychiatrist put him on an antidepressant, which did nothing. He was switched to another and another and another, until he had been on six different antidepressants by the time he was 6. “At age 6,” said Sheri, “there was a suicide attempt. Ben was in his bedroom after dinner, and I went in to talk to him and found him with a jump rope tied around his neck, which he had tied to the bed and stretched to choke himself. I called my pediatrician and said, ‘You figure out what is wrong with my baby.’” The Blaylock’s finally found their answer. Not from a doctor, but from watching a news segment on ABC. “It was a story about early onset bipolar,” said Sheri. “The mother had been through all the things we had been through.” The segment also suggested a book, “The Bi-Polar Child.” Sheri immediately bought the book and said, “By the time I finished reading it, I knew.” Even knowing that Ben had pediatric bipolar disorder didn’t help them. The Blaylock’s went to another psychiatrist, filled out a Child Behavioral Checklist at the doctor’s suggestion and sent it in to his office. On the day of Ben’s appointment, they took the copy of “The Bi-Polar Child” with them. The psychiatrist told them, “This can’t be it.” The doctor’s dismissal of the Blaylock’s was not unusual. “When we started this,” said Todd. “40 percent of psychiatrists said that a child under the age of 5 can’t be bipolar.” The Blaylock’s did their own research on the Internet and found Tulsa psychologist Dr. Mary Rineer’s name listed and called her. With the help of Dr. Rineer and a psychiatrist she referred them to, Ben was put on mood stabilizing drugs and started weekly intensive therapy. “Ben finally slept through the night,” said Todd. “Within about three weeks, he was much better.” “He came home after one of his sessions with Mary and said, ‘I never thought anybody would understand.’ Ben would talk to her,” said Sheri. It was at this point that Ben opened up to his parents and they realized how truly sick he was. He told them about hallucinations, seeing people with guns at church, or a knife hanging over his desk at school, waving at him. With a correct diagnosis and appropriate help, Ben was much better, at least for awhile. What is Pediatric Bipolar Disorder? According to Children’s Mental Health Matters, “bipolar disorder, also known as manic-depression, is a type of mood disorder marked by extreme changes in mood, energy levels and behavior. Symptoms can begin in early childhood but more typically emerge in adolescence or adulthood.” Dr. Rineer says that it is important to understand that the criteria used to describe adult bipolar disorder “do not effectively describe pediatric bipolar disorder.” She refers parents to the article “Recognition and Treatment of Pediatric Bipolar Disorder,” by Mani N. Pavuluri, MD, Michael W. Naylor, MD and Phillip G. Janicak, MD. While children with bipolar disorder may exhibit behaviors of Attention Deficit Hyperactivity Disorder (ADHD) and Oppositional Defiant Disorder (ODD), they also exhibit additional behaviors not common to ADHD or ODD. These behaviors include elation, grandiosity, racing thoughts, flight of ideas, decreased need for sleep and hypersexuality. Pediatric bipolar disorder may be misdiagnosed as ADHD or ODD. And, because the disorder develops over time, it is often difficult to diagnose. Dr. Rineer points out that current research on bipolar disorder is focusing on early identification and treatment. “Tulsa has many exceptionally competent physicians and mental health professionals,” says Dr. Rineer. “When faced with this diagnosis, many parents may seek a second opinion. A consultation for a second opinion is often sought from a major teaching hospital with a hospital-based program. Lists of hospital-based programs can be found through research. Two individuals involved in hospital-based programs are Dr. Mani N. Pavuluri, with Rush-Presbyterian-St. Luke’s Medical Center in Chicago, Illinois, and Dr. Barbara Geller, with Washington University Child Psychiatry Clinic at Children’s Hospital in St. Louis, Missouri. My opinion,” adds Dr. Rineer, “is that the future remains hopeful for children and adolescents who receive appropriate diagnosis and treatment.” On-Going Stress Even with a diagnosis, stabilizing drugs, and a skilled therapist, Todd and Sheri continued to struggle, not just with the disease, but with the financial hardships of having a child with a chronic illness. “Insurance sees physical health and mental health differently,” said Sheri. “It only pays for 30 visits [to a psychologist] and Ben needed much more. He takes six drugs, 17 or 18 pills a day. Even with good insurance, our pharmacy bills are several hundred dollars a month.” Despite some setbacks, Ben did well on his new routine for about two years. But his behavior began to deteriorate. He began to have more problems at school and he told his parents that he was afraid he might hurt someone. Ben became increasingly manic, violent and aggressive. Seeing that they needed more help, Dr. Rineer referred the Blaylock’s to Dr. Mani N. Pavuluri, a specialist in Chicago who agreed to work with Ben. Todd took a leave of absence from his job as a Highway Patrol Officer and he and Sheri traveled to Chicago to hospitalize Ben at Rush University Medical Center, which has a special unit for children with mood disorders. “This was the hardest thing we’ve ever done,” said Todd. “We’ve always been open and honest with Ben about everything, but we couldn’t tell him that we were putting him in a place where we would be unable to stay with him. They [the hospital staff] told us we couldn’t tell him, so we said we were going to dinner, and we left him. It was heartbreaking.” Todd said that, to him, the hospital room looked like a prison. “Everything was white. There was nothing on the walls.” The staff assured the Blaylock’s that kids like Ben need a completely blank room. “To these kids,” they said, “this is the happiest place in the world.” Ben was stabilized with several medications and a variety of behavioral therapies. Unfortunately time, money and insurance ran out. Todd and Sheri meticulously continued the hospital’s work at home by developing a very rigid schedule for Ben and completely remodeling his room to provide a more soothing and less stimulating environment.  Unfortunately, despite their efforts, Ben continued to be a very sick child and all four of his psychiatric medical staff recommended a residential treatment facility to allow Ben to focus on the development of coping techniques, one stressor at a time. The Blaylock’s began a desperate search in Oklahoma for the type of residential placement the doctors were recommending for Ben, but found nothing. At one point, they were even told to give up their parental rights and let the state take over. Would parents get the same advice if their child had diabetes? Or asthma? “In-patient units in Oklahoma are merely warehouses,” said Sheri. “They’re somewhere to put people to give parents a break. They’re for kids that the parents can’t handle, not a place to get well. The program at Rush [in Chicago] is designed to help kids get well.” After extensive research, the Blaylock’s found Yellowstone Boys and Girls Ranch in Montana, a successful, 50-year-old, not-for-profit program designed specifically for kids with mood disorders. A Chance at Life While the thought of sending Ben so far away from home was heart-wrenching for the Blaylock’s, they knew the Montana facility was the only hope for saving his life — and Ben wanted to go. They completed the extensive entrance screening and psychological testing that the school required, and Ben was accepted. The problem? The facility is $10,000 a month, and Ben’s expected stay would be 18 to 24 months. “We wondered how anyone could pay that,” said Todd, “so we called and found out that all the kids are on Medicaid. We’re sitting here knowing this is what our child needs, but we can’t make it happen. So now we’re in the position of asking strangers to help us. We’ve never asked anyone for money.”  “The doctors told us that if we lived in Illinois, we could qualify for their state’s Care Grant,” added Todd, “which helps families who don’t qualify for Medicare, but aren’t wealthy, pay for care. I’ve been in the Marine Corps, in public service [Highway Patrolman], and to come back to find that our state treats citizens like this infuriates me. If Ben had cancer, insurance would pay, but because it’s mental health, he gets nothing.  It’s frustrating that although his illness can be successfully managed, allowing Ben to become a healthy and contributing member of society, it is not given the same priority as other life-threatening conditions.  We don’t know where to look to obtain funding for this program. Fifteen percent of kids with this [bipolar] don’t make it.” Today, the Blaylock’s find themselves asking for money to save their child’s life. “We’ve done everything the doctors tell us,” said Todd. “Maybe by telling our story, we can make a difference. Maybe we can help some of these people in the middle who can’t afford care, but make too much to get help.”   Todd said that he and Sheri also want to raise awareness about bipolar disorder. “We’ve had people referred to us who are going through the same thing with their children.” The Blaylock’s would also like to see high quality facilities in Oklahoma for people with mental health problems. But, more than anything, the Blaylock’s want to save Ben’s life. “If he doesn’t get care,” said Todd, “we have no doubt that he’ll kill himself or hurt someone else. When your 10-year-old child says, ‘When can I go to the school in Montana?’ and you have to say, ‘We’re working on it,’ it’s sad.” Update Ben is now at the residential school and facility in Montana. He is homesick, but happy to be there. However there is only enough funding for a very short time. To help Ben, Saint James Presbyterian Church in Jenks has set up a Benevolence Fund on Ben’s behalf giving contributors a tax break on any donations to get him the medical help he needs so desperately. The Blaylock’s are also working on creating a trust for other Oklahoma children and their families who are in need of assistance with this devastating illness. Donations can be sent to: Benevolence Fund St. James Presbyterian Church 11970 S. Elm Jenks, Ok. 74037 jane@stjamespresbyterianjenks.org Or Todd & Sheri Blaylock Spirit Bank 1315 E. Taft Sapulpa, Ok. 74066 Contributions may also be sent directly to Yellowstone. Reference that the money is for Ben Blaylock. The address is 1732 S. 72nd Street West, Billings, MT 59106-3599. Sidebar: Symptoms of pediatric bipolar disorder may include: • an expansive or irritable mood • depression • rapidly changing moods lasting a few hours to a few days • explosive, lengthy, and often destructive rages • separation anxiety • defiance of authority • hyperactivity, agitation, and distractibility • sleeping little or, alternatively, sleeping too much • bed wetting and night terrors • strong and frequent cravings, often for carbohydrates and sweets • excessive involvement in multiple projects and activities • impaired judgment, impulsivity, racing thoughts, and pressure to keep talking • dare-devil behaviors • inappropriate or precocious sexual behavior • delusions and hallucinations • grandiose belief in own abilities that defy the laws of logic (ability to fly, for example) source: www.bpkids.org Resources Child and Adolescent Bipolar Foundation, 847-256-8525, www.bpkids.org Depression and Bipolar Support Alliance, 800-826-3632, www.ndmda.org www.bipolarchild.com www.bipolarcentral.com National Mental Health Association, 800-969-NMHA, www.nmha.org The Bipolar Child (Broadway Books: 2006) by Demitri F. Papolos, M.D., and Janice Papolos Parenting a Bipolar Child (New Harbinger Publications: 2006) by Gianni L. Faedda, M.D., and Nancy B. Austin, Psy.D.