Peter’s Bipolar Fear of Harm Story


I walked into the psychologist’s office for a diagnosis of dyslexia and walked out with “your son is at high risk for living with bipolar disorder.” At age six we took our only child, Peter, to a private neuropsychologist because I suspected he lived with dyslexia and I wanted a formal diagnosis to provide to his school. He had already been diagnosed with ADHD the previous year, the year before that GAD (Generalized Anxiety Disorder), the year before that SPD (Sensory Processing Disorder), the year before that PDD (Pervasive Developmental Disorder), and the year before that it was childhood apraxia of speech. A mountain of diagnoses and none of them feeling quite right. It was suggested he lived with ASD (Autism Spectrum Disorder) and that never felt quite right either. I felt like for all the mountain professionals who had seen Peter, there was still something missing that we weren’t quite seeing. 


I was motivated to seek a comprehensive psychological assessment because I was certain my child lived with dyslexia, ADHD, and APD (auditory processing disorder). I only needed the psychologist to confirm what I already knew and then start the best treatment for it. I was not prepared for hearing “bipolar” as a possibility. What made bipolar disorder so shocking to me is how happy he was most days. He would wake up bright and early, happy and content, go to school, go to whatever YMCA sport he was playing at the time, and he had tons of friends. Peter was one of the most popular kids in his class, he got invited to all the birthday parties, and all the little girls would say he was their boyfriend. It seemed impossible that a child so young, a child who overflowed with empathy, could live with such a serious disorder. 


There were things overlooked because of the brief nature of how they swooped in and out of our daily lives. Every morning this child woke up at 2:30 AM and crawled in our bed, talking at ninety miles an hour for thirty minutes and then falling asleep between his father and me. He would be fully recharged and ready to start the day at 5:00 in the morning. His teacher remarked that she never saw a child who played so hard and napped even harder. Peter was often asleep at the lunch table and had to be carried over to his sleeping mat. All his friends were starting to outgrow naps and he still required them, totally self imposed, every afternoon for hours at a time if we let him. 


He was afraid of things his little friends never even dreamed about. Peter was fearful of death and dying, even at age three. He had questions about the meaning of life as a toddler. As a preschooler Peter was deeply grieved he had not solved world hunger, ended homelessness for our unhoused population, or found a path towards world peace. I’d occasionally think, “how bipolar” and then as quickly as the thought came I would dismiss it. What preschooler could possibly be living with bipolar? He woke up happy and content and continued to have good friends, but every single night, around the same time, he would get so anxious and sad he had not solved the problems of the world that he would sob uncontrollably. It would last an hour or so and then pass. It became so normal, part of our daily routine, I didn’t even stop to question it. He was sensitive. Empathetic to the highest degree. If a friend was hurt he would cry and grieve as if he was the one who had been injured. 


When he was five years old, still only in preschool, his teacher complained (and I do mean complained) that Peter was so talkative, was never quiet, was disruptive, and could not stay on task. I was furious only because we had our spring parent teacher conference two weeks prior and she said he was fine, “all boy,” and nothing to worry about when I had mentioned I was starting to see he sometimes had difficulty with staying on tasks, following directions, and his energy level appeared to be more than most children his age. She had reassured me he was no different than any of the other “boys” in the class. I was mainly mad because I suspected ADHD and if she had been honest with me two weeks prior we could already be well on our way to having him diagnosed. It didn’t take much to have him diagnosed with ADHD. His father took him to the pediatrician, I had already had the teachers complete the Vanderbilt Assessment tool for ADHD, and Peter made the visit easy for the doctor. He spun around in the office on the doctor’s stool, flying through the room, and very chatty. All things we had never seen before in any previous office visit. My husband walked out with a prescription for Vyvanse. 


At this point we went down the rabbit hole of different stimulants. Switching, increasing, and decreasing doses as reports from teachers and his parents were then shared to the pediatrician. According to his teacher, “it kind of worked”. There was some improvement in focus but increased anxiety over time was noted, sensory sensitivity was increasing, and he was grieving more and more over tiny things. Actual grief. We continued to attribute it to him being super sensitive and quirky. Afterall, he still had the energy to play soccer and to have fun friends. 


Towards the end of his kindergarten year we had Peter evaluated for a reading disorder. The psychologist was more concerned about the possibility Peter was living with bipolar. She scheduled him for an appointment with a local psychiatrist who specializes in pediatric onset of bipolar but that wasn’t going to be for months. Two weeks later, my then six year old son could not get out of bed. He hurt all over. His head hurt, his stomach hurt, and he felt so sad. He sobbed uncontrollably if awake, and slept most of the time. He couldn’t remember a time he had ever been happy and could not imagine a time where he would ever be happy again. In less than ten days he lost ten pounds. Peter wasn’t eating and barely drinking. We took him back to the pediatrician where Lexapro was added to his treatment plan. Our tiny little boy was diagnosed with major depression. 


Within hours of taking the Lexipro Peter was happy again. He was singing, playing, and incredibly happy. He remained extremely talkative, happy, and very energized the entire summer. When the psychiatrist finally saw him he said, “Wow! How long has he been hypomanic?” The entire summer, since he started the antidepressant. From there it was a lot of weaning off the antidepressant and stimulant while trying to find something else to stabilize the mood. Eventually with medication Peter achieved remission for three years until puberty started. 


At age nine Peter entered into explosive mixed mood episodes. He was so irritable and cranky, he would get so frustrated and nothing made him happy. After much trial and error it was decided Peter would try two medications that we had not previously tried. It worked. Trileptal and lithium was the way to manage his mood disorder. 


The combination of lithium and Trileptal worked for quite a while. Another major growth spurt and again instability. This time with increased fears, paranoia, nightmares, and bedwetting. Years ago, Peter’s psychiatrist had suggested he may have a phenotype of bipolar called Thermoregulatory Fear of Harm Mood Disorder (FOH), so I revisited the idea that my son lives with Fear of Harm and that he may need more targeted care. I was able to contact an organization that understood FOH, could provide the consultation and protocol to manage it, and provide the appropriate support for families. Finally, it was as if we could really understand our child completely and fully for the first time. He wasn’t abnormal or unusual in any way, he was very “typical” for someone who is living with bipolar and its phenotype, FOH. 


Taking ketamine alongside other targeted psychiatric medication, practicing cooling strategies, and the practical parenting guidance provided by CMHRC has helped my now teenage son to be more independent in daily living skills, focus on academic work, and allow him to have a solid social life. He will be able to attend functions, go shopping, learn to drive, and apply for jobs. All things that were uncertainties he’s now in the process of learning. 


Finding Children’s Mental Health Resource Center and having the support and knowledge from other parents who are raising children with the same disorder has been invaluable. The parent support group is a place I can laugh, share, cry, and learn different approaches to incorporate into managing this complicated disorder. My family has found friends who understand us in ways family and close friends will never understand. My child also was able to have part of his childhood preserved. As all parents do, I worry about his future. I know that because of CMHRC his future has more possibilities and options than what we could have ever imagined. 

It will be okay. 


My only regret is not having the kind of parent support earlier in this journey when he was first diagnosed with a mood disorder. We currently homeschool because we didn’t have the specialized educational advocacy support it took to help the school partner with us as parents. Nor did we have a homeschooling support group that understood his unique learning challenges or specific practical parenting guidance that would have made our day to day much smoother. All the usual parenting books don’t really address the intensive underlying biological issues I encounter every day. My hope for other parents is they find that supportive community that understands their family and their child’s needs. Finding that group of welcoming people makes the biggest difference. It can change lives. It certainly changed my child’s life for the better.

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