March 5, 2008
Nathan was never an easy child to raise. He was breech, caesarian birth, and didn’t look healthy right after being born. He was very pale, and the nurses needed to suction the meconium out of his mouth and nose to get him to start breathing. Nathan had very low Apgar scores and was jaundiced. He cried a lot as a baby, especially at night. He seemed to be getting insufficient nutrition from breast-feeding and began sleeping through the night only after we started him on formula.
During his younger years, Nathan had a series of medical problems and surgeries, including surgeries for three sets of ear tubes (for chronic ear infections) and the removal of his tonsils and adenoids. He also had encopresis (involuntary bowel movements), which continued into his early high school years (much more about this later).
Alternative Therapies
If you’re a proponent of alternative treatments, you may be thinking that Nathan had allergies or food sensitivities or other problems that alternative therapies could cure. After all, chronic ear infections and encopresis could be due to an allergy to or inability to fully digest milk products or wheat or gluten. Well, we tried all that—allergy testing; milk-free, gluten-free diet; homeopathy; NAET; chiropractic care; cleansing diets; numerous concoctions; vitamins; minerals; you name it. None of it helped.
Encopresis
The most maddening health problem was the encopresis (although we didn’t have a diagnosis or name for it until much later). We couldn’t go anywhere without having to worry about it. We could smell when it happened, but Nathan seemed not to think that anything was wrong. He was just fine walking around with a full bowel movement in his pants.
At first, we chalked it up to the busy-boy syndrome. As parents, we could sort of live with that… until he turned five and was still soiling himself. We took him to all sorts of doctors to rule out anything physical—an allergy, a food intolerance, damaged nerves, a defective colon. The doctors ordered an MRI to determine whether Nathan had some obstruction in his bowels that was causing the encopresis or some nerve damage. Nothing seemed to by physically wrong. Nobody even mentioned the word “encopresis.”
After ruling out physical causes, our pediatrician recommended that we take Nathan to see a child psychiatrist. The psychiatrist diagnosed it as a behavioral problem and saw Nathan every few weeks for an hour of therapy. She gave us several suggestions on how to deal with the problem at home. Nothing she suggested improved the situation. After about a year, the psychiatrist announced that she was retiring. We took Nathan to see a child psychologist with similar results.
We were convinced that this was a behavioral problem and were frustrated with Nathan. If we could smell it, why couldn’t he feel the need to go? Why couldn’t he feel it in his pants and clean himself up before we had to confront him about it? We took Nathan to other doctors and psychologists, but nobody seemed to be able to offer any help or even a diagnosis as to what was going on. When he started going to school, we needed to keep a change of clothes at the school. We were afraid to let him spend the night at a friend’s house, afraid that he would be teased if his friend found out and embarrassed that we couldn’t even potty train our child. Nobody else we knew seemed to have trouble potty training their children.
Finally, we obtained a referral to a gastroenterologist—a doctor who specializes in the diagnosis and treatment of disorders of the digestive system. She immediately diagnosed the condition as encopresis and informed us that she could cure it. What a relief! She also told us that it could take years and years for it to completely go away. She explained that Nathan’s bowel had become distended and he couldn’t really feel a need to use the restroom. He would need to be on high levels of fiber and laxatives for many months until his bowel had time to recover its normal functioning.
We followed her instructions, and she treated him for several years. Throughout this time, he continued to soil himself about once a week, decreasing in frequency over the years until the condition finally subsided in about his sophomore year of high school.
Anger Issues
Nathan had other behavioral problems, as well—particularly bouts of violent anger, perhaps at least partially as a result of his encopresis and everything related to it. We recall one incident in which we were at a Boy Scout meeting. Nathan was about six years old. All of the boys had built boats for the “gutter race” (a race in which the boats float down a rain gutter). When Nathan’s boat lost his race, he took it and smashed it against the ground in front of everyone (about 50 people in all) and started yelling and crying and cursing. We were beet red and quickly rushed home embarrassed.
We signed him up for football when he was about eight years old. Some nights when we picked him up, we found him standing toe-to-toe with his 6-foot 4-inch, 350 pound coach shouting at him, “I hate football.” Other nights, Nathan was in tears. He had few friends. Whenever he made a friend, he would eventually get into a fight and drive the friend away. When he lost a video game, he would throw the game controller across the room. We finally banned video games.
Nathan would usually quit when losing a game or start screaming and throwing things if he lost. When golfing, he would become very enthusiastic on the ride to the golf course, but after the first couple holes, he would usually start crying, cursing, and throwing his clubs. We had to constantly watch what we said around him. If you were to say or do the wrong thing, he would just snap and starts yelling or crying or slamming doors or throwing a fit. To avoid conflicts, we had to “walk on egg shells” around Nathan. He punched holes in the walls, broke things, and frequently threatened us. The bigger he grew, the more physically threatening he became. By age 13, he was six feet tall and weighed over 200 pounds.
Nathan’s Breakdown
The Christmas when Nathan was 11 years old, Nathan soiled his pants badly at his grandparents’ house (my in-laws). At the time, my wife was suffering from depression or anxiety (or both), was taking Prozac, and seeing a therapist. She obtained a referral from Nathan’s doctor to see the same therapist she was seeing, who also had experience in counseling children. We wanted her to work with Nathan on taking more ownership of his soiling problem (wash his own clothes, take his own medicine, etc.) and deal with his anger issues.
During counseling sessions, it came out that Nathan was depressed. We all agreed that Nathan needed something to help with his depression and his quick and frequent mood swings, so the therapist suggested that Nathan see a child psychiatrist in the area who had a stellar reputation.
The psychiatrist met with us and with Nathan for about an hour, diagnosed him as suffering from ADHD, and prescribed Adderall, something that seemed kind of strange to us at the time. Nathan had never had problems with schoolwork or grades, but we thought the doctor noticed something that we were unaware of.
When Nathan began taking Adderall, we and others noticed that Nathan was more talkative and more focused on his own interests. He had always ignored what he was supposed to do in favor of whatever he wanted to do, but with Adderall, the problem became worse. He had broken his pinky finger and had it and his entire forearm in a cast, so he was unable to do any of his usual outside activities, such as swimming or playing the piano. He became very introverted and spent most of his free time playing Solitaire. When he spoke, it was only to recite lines from plays, movies, and TV shows.
When taking Adderall, Nathan was still depressed, so the doctor placed him on Paxil. He now seemed somewhat happier but more prone to impulsive outbursts. In a two-week period, Nathan vomited during lunch after chugging five fruit drinks, received an in-school suspension for cussing in class, brought home a note for cussing in class, received a one-day suspension for fighting after calling some kids “queers,” and stormed out of a neighbor’s house after having a physical fight with her nine-year-old son. He was also very argumentative and threatening at home.
One day, when my wife was preparing to head out with our kids to her parent’s house for the weekend, Nathan decided, without asking us for permission, to pull our van up from the end of the driveway closer to the house, so we could load it. He didn’t have a driver’s license and hadn’t had any instruction, but he figured he could do it. Our driveway led up to a garage that had been converted into a family room. I was on the couch sleeping. I heard a crash, jumped up, and saw the side of the room near the driveway pushed in about a foot. Nathan had driven the van right into the patio doors smashing the glass and pushing the frame into the house!
One Friday evening, a couple weeks later, we were attending the high school football team’s homecoming game. I was sitting in the stands, while my wife was working the concessions booth. Nathan was off playing football behind the stands with his friends. Just before halftime, a friend of mine found me in the stands and informed me that Nathan had gotten into some trouble. The police were involved. I rushed down to the concessions stand, where another parent I knew said that my wife had taken Nathan home.
When I arrived home, my wife told me what had happened. Nathan had had an altercation with one of the other kids, threatened suicide, and then started banging his head against a fencepost. His forehead was bruised and bleeding. Nathan was now in the basement watching TV as though we had just had a normal family outing to the homecoming game.
The next morning, my wife called the psychiatrist and arranged to take Nathan to a center for disturbed teenagers. She drove him over and signed him in.
That night, my wife and I had a wonderful dinner out. After nearly 12 years of having to deal with daily fighting, arguing, temper tantrums, threats, calls from school, having our belongings destroyed, we were finally free of Nathan. I know this sounds brutal, but the relief was very real. We were happy to be rid of our problem child.
We visited Nathan every day for the five days he stayed at the center; Saturday through Wednesday. During his entire stay, Nathan argued with the counselors and kept repeating that he was in a “loony bin.” He still believes that having to go to the center was punishment.
During this time, I left several messages for Nathan’s doctor at the center and at his offices but received no call from him. I was concerned about Nathan’s medications. He was taking 30 mg Adderall 2x/day, 20 mg Paxil (lowered from the original 30mg), 200 mg Tegretol 2x/day, and 25mg Imipramine at bedtime. Nathan seemed even more anxious, depressed, and aggressive than ever, but I could not reach the doctor, and he did not return my calls. Apparently, the doctor now thought that Nathan had bipolar disorder, since Tegretol is used to control mania, but up to this point, I didn’t know what he was thinking, because he never returned my calls.
That Wednesday, Nathan was dismissed from the center and placed in intensive outpatient therapy (six sessions). He constantly fought this and was argumentative during group sessions. After three counterproductive sessions, we decided to request Nathan’s release from the program. Nathan’s counselor agreed that the program was doing Nathan little good and that Nathan was disrupting the therapy for the other patients.
Weaning Nathan off Medications
At this point, I had lost complete confidence in psychiatric care. The medications had made our life a living hell. Over the course of three weeks, I weaned Nathan off of all his medications. I told him that I would no longer tolerate him getting into trouble at school. If he was feeling angry, he was to call home and I would pick him up (I worked out of my home about a mile from the school.) I cleared everything with the school. They knew that Nathan would have get-out-of-trouble free passes, but that any anger outbursts at school were not to be tolerated.
Nathan never abused his get-out-of-trouble-free passes. He managed to make it through the school year with only a couple more calls home. The junior high school assistant principal informed me that once Nathan got to the high school, things would improve. He was right. We still had some problems, particularly shouting matches and fights during swim practices and meets, but overall, our family life became more manageable. Nathan also found a music teacher who mentored him throughout his high school years. What a godsend he was!
My Wife’s Breakdown
During the same time Nathan was seeing the therapist and psychiatrist, my wife was seeing the same therapist and her primary care physician for the treatment of depression and anxiety. Her doctor had prescribed several different antidepressants over the course of a couple years, including Zoloft, Prozac, and Paxil. They all helped for a few months, but then seemed to increase her anxiety and make her more irritable.
Eventually, at about the same time that Nathan landed in the center for disturbed teenagers, my wife had a major manic episode that sent her to the stress center. This is when she received her bipolar diagnosis.
Wrapping Up
Nathan made it through three years of college before dropping out. He still has bouts of rage, and we believe he has some early form of bipolar disorder, but he manages, and most of the people he meets love him. We worry about him and his future, and I worry that my own biases against psychiatric medications and his negative experiences with them and with psychologists and psychiatrists will prevent him from seeking professional help when he needs it, but at this point in time, he seems to be holding steady.
What happened to us as a family makes me aware of how bipolar disorder really feeds on itself. I think my wife and our son have a genetic vulnerability to the disorder, but I wonder if the disorder would ever have manifested itself if encopresis hadn’t entered the picture and put so much stress on our family. I wonder, too, if the encopresis was possibly caused by our son’s genetic vulnerability to mental illness. Whatever the case, once the snowball from hell starting rolling, it just kept picking up speed until drove two family members into full-fledged mental breakdowns and decimated our lives together for many years.
We have managed to make it through these difficult times, and I suppose we are stronger for having done so, but I wouldn’t wish this on anyone. When I look back, it is completely mind boggling… surreal. When I recount the details, I can barely believe all of this (and much more) really happened.
I felt as though I was reading a story about my brother and me. My brother still struggles in life. I am on a gluten free diet (3 years) and became aware that my mood swings, irritability, bouts of anger, weight gain, low grade headaches, acne and chronic constipation were all symptoms of gluten intolerance. I wish everyone would try this lifestyle, especially my own brother and his children. I found your blog while researching encopresis which is striking my 4 year old nephew. He also has behavioral issues. I fear this is the beginning of a long line of possible symptoms, as Nathan suffered, if the gluten free diet is not implemented. It sounds too good to be true, but I assure you I am a testament to a balanced, healthy life and I can attribute it to going gluten free! I have come to believe that the health of the gut is one with brain chemistry. My father and maternal grandmother also suffered from the gluten intolerance. Unfortunately they were undiagnose and both lived unsettled lives. Many symptoms they exhibited (as does my brother) could be considered bipolar behaviors. My father died at the age of 45 of a brain tumor his mother suffered mental illness (paranoia to be sure) and died in her 60’s of cancers. I wish all the best health to you and your family. Please feel free to contact me if you would like to hear more about my journey.
Wow this too sounds like a de ja vu. I have a son Luke who is entering on 11 years old.
He has been diagnosed with bipolar disorder and encopresis.
It’s comforting to know someone else out there has been through this hell. (One I wouldn’t wish on anyone!!) Thank you so much for the blog!!!
Hi,
I have a son who was diagnosed with clinical depression and medicated at 9 years old. He has had encoprises all his life and never really toilet trained in that way.
We have lived through 2 1/2 years of hell in high school, he has been suicidal as a result of the bullying, he is 14 and needs to wear incontinence products. Every waking moment of our lives is defined by this illness. We have been pushed from pillar to post in treatment and NOTHING has worked. We gave up the psychiatry thing a couple of years ago as it just had no effect and he hated it.We were told he would grow out of it, but he isn’t. We’re off to a new psychiatrist to have his medication reviewed but I hold little hope that this will be anything more than just a review.
I pulled him out of the state school a month ago and he is now in a very small private school which I can not afford , but I couldn’t leave him where he was.
Any help we have been given I have had to find on my own and fight very hard for.
He will be 15 in August and we are at the end of ourselves and I don’t know what to do.
Any ideas would be much appreciated, we are so lost and feel so alone..
Linda
Hi. We have a young neighbor boy who (we have been told) has childhood bipolar. He is 9 and our son is almost 12. This child is quite difficult to deal with and has decided to blame each and every incident on our son. Our son has won awards for honesty, maintains straight A’s in accelerated classes and is known for his good character. Our son has NEVER been a problem. We understand (from other neighbors) that others have had issues with him, too. However, now he tells our son that his father won’t allow him to play with our son because our son “is mean and always yelling at him”. That excludes our son from playing with the group of kids involved. Should we approach the neighbors and ask if they truly feel this way? We have only lived next door to them for about 3 months. They seem very nice but the wife seems to always be stressed and we have heard that she is not receptive to others approaching her about her son. I feel bad for him but I have to think about my son as well. Any input from you would be greatly appreciated. Thanks for sharing your story.