I want to share my family’s recent experience. A is my eight year old daughter. She was seven when she was admitted to the Psychiatric ward of a local hospital (August 2007). This occurred when she was raging out of control which was a worsened condition that started just a few months before. She was admitted to the day program of a Charlotte hospital psych ward in order to diagnose her condition. At the end of the program she was diagnosed as being bipolar.
She was put on various mood stabilizers and antipsychotic medicines over the next few months. The Psychiatrist ended up putting and leaving her on Lithium and Serequel starting around October of 2007. She was never stabilized on any of the meds. In fact, the doctor tried an antidepressant during this time period which caused a rage of unbelievable proportion. All during this time my wife and I were taking her to various doctors looking to ensure that the condition was not physiologically based. This included many blood tests etc and involved two pediatricians, two psychiatrists, an allergist, an endocrinologist and a gastro enologist. This was in addition to the tests that were run during her hospital stay which included general blood tests, an MRI, urinalysis, EEG etc. As we were pursuing additional tests we were also searching a therapist who was a specialist in working with bipolar children. This took several tries until we found Kristen (this is a story in itself). All during this time, A's behavior did not stabilize. She would rage one or more times a day that would last an hour or more. She would destroy rooms throwing furniture etc and demonstrate unbelievable strength. She put holes in a door and walls. She acted not only in a bipolar manner but also OCD, ODD etc.
Our Approach to the Problem
The bottom line is that A was out of control and the meds were not working. I spent an average of 3 to 4 hours each day (and Traci countless additional hours) on the internet searching for clues as we continually analyzed her medical tests. We prepared a detailed medical history file which included a complete copy of her medical records since birth, her entire file from the psych hospital and all tests taken on her. We also prepared and carried memos for each doctor laying out all the possible conditions that we thought could be causing this. In short, we documented and communicated every unusual item from A's birth no matter how small it may have seemed.
Going through this experience is the toughest thing I have ever experienced. Traci and I were not only dealing with a very sick child but also trying to grapple with our own emotions and shock. We were reaching out for help to the medical community. What I found was a total lack of support (with very few exceptions, Kristen being the primary one). I was mocked and belittled by MD's as I took control trying to find an answer. Traci was handling most of the rages and dealing with most of the doctor trips and the dreaded blood draws. Our pediatrician refused to see her when the rages began and did not even show enough concern to call and check on her. Various doctors would not return phone calls or respond to medical based faxes. ALL doctors refused to look at A's medical history from a holistic perspective. I found doctors did not listen to me and mainly discounted my countless hours of research. In a nutshell, this was a very lonely voyage. Every doctor did one of two things…..either they did not want us around because we were an inconvenience or they thought I was simply a Dad in denial. I would be thoroughly prepared with my research based upon A's tests and each time the MD would show very little interest.
After chasing down and eliminating many possible conditions, in January of this year I requested that our initial Psychiatrist write up a blood test to check A's thyroid. Her TSH levels were tested and came back normal in August during her hospital stay, but she never had a full workup looking at her T3, T4. When I asked the Psychiatrist, he refused saying the
TSH was enough. So as I had done many times before, I just called other doctors until I got what I wanted. Our pediatrician (now former pediatrician) agreed (I think just to shut me up). The test results came back and the results indicated that A was hypothyroid. The Dr called and asked we run the test again which we did immediately. The tests came back with the same result. The doctor did not call so I faxed him a letter asking him what we should do. He left me a voice mail saying that he did not think it was a problem. I had thoroughly researched Thyroid testing and knew he was wrong, so Traci got A an appointment at a Pediatric Endocrinologist (she called daily to get us in quicker as the first available appointment was not until April 2008). The Endocrinologist ran the TSH, T3, T4, and thyroid antibody tests. I knew from my research that Lithium could cause this condition so Traci and I had very low expectations. We expected A to be bipolar with hypothyroidism induced from Lithium. But, I also knew that if the thyroid antibody test came back elevated that she had Hashimoto Disease with is an autoimmune disease which would not be caused by Lithium. February 5th, 2008 I received a call from Traci. In tears of joy, she told me the doctor had just called her confirming that A did indeed have Hashimoto Disease. I knew that the thyroid can cause behavior issues that mimic bipolar. We immediately put her on a thyroid hormone replacement pill and started pulling her off Lithium and the Serequel very slowly. Within just three days we notice improvement. By the end of February she was off Lithium and Serequel totally and her thyroid levels were proper. Two weeks ago she was released by our Psychiatrist (new one). Today she is not only back to normal but better than before.
What I Learned
I wanted to share our experience in hopes that this could help others. I learned so much from this experience. First of all, I believe that the mind and body are integral to each other and there are many physiological reasons for bipolar like behavior. As the bipolar diagnosis has exploded in the United States I have a theory why this may be the case. If you have a child that is raging the medical community is going to diagnose the child as being bipolar if they are unable to discover another reason. Since there is no blood test to confirm a bipolar condition, it is the default when nothing else can be discovered. I encourage everyone to test your child in every way possible and to research all possible reasons for the behavior the child is experiencing. There are many possible physiological possibilities for a child to have bipolar like behavior. Next, I found most doctors to be awful. Not one showed a genuine interest in helping us. We were turned away and thrown out of medical offices due to A's rages. In one office, A actually broke the doctor's stethoscope. He would not even call me back. The sad thing is you have to be the quarterback for your child. You can accept the bipolar diagnosis while going through thorough research. I accepted that A was bipolar, despite that the fact that doctors thought I was in denial. Much of the testing we did on A was looking for conditions that could make a bipolar condition worse and not necessarily a condition which would remove the bp diagnosis. Although very frustrating, I did not let the doctors’ attitudes persuade me. Because I wanted to get A’s story out quickly I will not be able to lay out the many conditions I found that could mimic bipolar behavior in this memo. I am planning on writing a document which I will begin before the summer begins that I hope will be assistance to those who find themselves in a similar situation. I read all the bipolar books out there and found them lacking as to what a parent should do. Anyway, I am going to stop at this point for now. If anyone would like to ask me a question or contact me my email is below.