From the time Ally was nine months old, her parents Bill and Nancy knew that something was wrong.Ally couldn’t sleep, had temper tantrums up to 20 times a day, and increasingly became more aggressive. Medical professionals told Bill and Nancy not to worry, but they continued to seek help. After two misdiagnoses, Ally was finally treated for bipolar disorder, type I. Now twelve years old, Ally continues to work through medication, social, and school issues. Bill, Nancy, and Ally describe their family experience.
What is mania like for you on a given day?
Usually when that happens, I'm really crabby with my family and I snap back at everyone if they say something. I might break something. Usually I stay up in my room for most of the day.
How has bipolar disorder affected you?
It affects my friendships with a lot of people because they become frustrated with me. I also can't sleep very well and I'm angry a lot. My family is very good about it, but they can get irritated with me. It also bothers me that because of the medications, I have a lot of acne and I'm overweight.
What is it like to others that you have bipolar disorder?
I don't tell a lot of my friends because I know they won't really understand. Most of my parents' friends understand a lot better than my friends do. I only have one friend who really understands bipolar disorder because she had another friend who has it.
What works well in helping you manage your condition?
My medicines and a couple support groups have helped. Also talking to my therapist and my parents helps.
When was Ally first diagnosed with bipolar disorder?
From the time we adopted Ally at nine months of age, she was a pretty irritable child. She was hard to sooth and wouldn’t sleep. She would stay up for long periods of time at night, often taking four to five hours a night to fall asleep. She had an excessive amount of energy and was very oppositional.
We knew that something wasn’t right because she was so different from our other two boys. It was hard to convince the pediatrician that there were issues because she was so young and the doctor thought that it was a normal development. By age three and four, she had multiple temper tantrums that sometimes lasted for hours. At first she lost control at home, but then she started to do it in public places.
When she was six, we decided to seek a psychiatric evaluation. Initially, the doctor thought she had attention deficit hyperactivity disorder and placed her on a stimulant. This only worsened and activated her temper tantrums, so we stopped the stimulant after two days. After seeing another psychiatrist who diagnosed her with obsessive compulsive disorder (OCD), we finally decided to take her to an expert on bipolar disorder in Boston. Initially, the doctor suspected that she had an underlying mood disorder along with major depressive disorder and put her on an antidepressant. This helped somewhat, but the sleep issues continued.
We never knew what would set her off. One time, while driving in the car, she kicked my son in the back of his head. This shocked us because she had been verbally abusive in the past but never aggressive. She was very remorseful afterwards. She would cry and hit the car windows all the way to school and doctor’s appointments. She began to rip up books, put holes in her walls, and destroy other personal belongings.
One day we were driving home from school and she got into a disagreement with her older brother. When we stopped, she ran out of the car into the woods. She wasn’t coherent and I was unable to rationalize with her and she keep running and running. Luckily, her brother caught her. I immediately called her doctor who saw her the next day. From this manic episode and she was formally diagnosed with bipolar disorder, type I and put on a mood stabilizer.
What are Ally’s symptoms?
Overall, she is very irritable. One minute she is very depressed and in the next has a lot of energy, pressured speech, and may laugh inappropriately. She has difficulty sleeping, fixates on thoughts and obsesses about them, constantly worries about social problems she encounters, and has a very difficult time getting up in the morning. She can be very verbally abusive to others, easily frustrated, and destroy things. She cries frequently, often for a long time and cannot be consoled. She can have one to ten temper tantrums per day, often unprovoked. She has low self-esteem and feels that she is fat and that none of her friends like her.
What challenges have you run into?
We had tremendous difficulty with her schools and teachers. In the third grade, Ally was having difficulty with her homework, separation anxiety, and social issues. Because she was holding it together at school, the school not only refused to make modifications for her, but also did not believe her diagnosis was real. They blamed us for her behavioral issues and said that if we could provide more structure, get her to bed earlier that she would be better. Although the teachers admitted that they did not know much about bipolar disorder, they refused our offers to attend conferences, even at our cost. We had to go through an expensive school hearing, which we eventually won. The school, however, still refused to develop special modifications for her. Then, when her medications were not working and we had stop them to begin a new drug trial, they finally saw how Ally behaved without treatment. We ended up pulling Ally out of public school and sent her to a parochial school. They gave her special tutoring and tools to help her with her motor coordination.
What does Ally receive for medical treatment?
In the beginning, we were hoping for a cure. We thought that there would be a magic pill that Ally would take for the rest of her life. We thought it would be something like insulin, and basically she would resume a normal life. Unfortunately, medications come with side effects, even though the moods may be controlled very well, there are problems, like weight gain, acne, and movement disorders. These side effects have greatly impacted her self esteem. She gained 40 pounds in three months on one of her medications. In addition, she has to have multiple blood and heart tests.
The medications have helped Ally sleep better, calm her moods, decrease her anxiety and obsessive thinking and overall, become happier and more energetic. The medications also help her in therapy sessions because she has more insight into her behavior and how to handle her symptoms.
For Ally, cognitive behavioral therapy helps her identify triggers that make her out of control and strategies for calming down and getting in control. She has been in social skills programs with other kids with bipolar disorder and that’s been helped her to learn more about reading social cues and how her behavior impacts others.
How does Ally’s condition affect your family?
Ally’s condition is physically exhausting for the whole family. When she has trouble sleeping, is verbally abusive or has multiple temper tantrums, it takes a toll on everyone. Her brothers still have a hard time believing that her behavior is out of her control. In addition, they often resent the large amount of time that we have had to give her. When Ally is in a severe depressive state, it can really bring the whole family down. In addition, there are financial costs: her medications, treatment, driving to Boston, therapy sessions, and private school. When you’re around her and she’s negative or she’s screaming and yelling and we can’t get her in control, it can be very frustrating.
This is very hard for Ally. She often feels very alone. She doesn’t think her friends like her or she worries about the future and if anyone will ever love her. She is engrossed in the social aspect of fitting in.
However, there are positive things that have happened to our family. For one, we are better parents. We thought we knew everything about parenting from our other children, but nothing prepares you to handle children with such severe issues. We have realistically changed our hopes and dreams for our children and realize that the most important goal is to be happy. Our two sensitive and caring sons now have a real interest in advocating for those with mental illness. We have learned patience, understanding, perservance, compassion, and hope.
What advice do you have to other families?
First and foremost, do not blame yourself. This is a biological disorder and you should not be ashamed of your child’s diagnosis. Second, do not be adverse to medications, when they are indicated. Remember that your child may not have outward suffering but suffers greatly within. After all, if your children had diabetes, would you even have a second thought about giving them insulin?
Therapy along with medications is vital since medications are not a cure-all. Family counseling is important. Support groups can be helpful but you need a group with similar circumstances to yours.
Realize that you are not alone. Unfortunately, mental illness still has a stigma and although difficult, understand that people will not flock to help you like they would if your child had cancer. Find good friends and resources in the community and don’t be afraid to give yourself a holiday from your child. Never stop advocating for your child. You know your child best. Become as educated as you can about the disorder. Involve your whole family in the care of your child.
What resources have you found helpful?
Books we have found helpful are: The Bipolar Child, Straight Talk for Kids on Psychotropic Medications, the Explosive Child, the Strong Willed Child, and SOS: Help for Parents.