Patient letter
February 13, 1999
"I am a sixteen-year-old girl from Ohio. I am a former patient of the Pediatric Pain Program at UCLA, having been there in 1995 and 1996.
"My pain problem began on January 3, 1995. I developed lower right-sided abdominal pain with nausea, vomiting, and diarrhea. I had numerous testing done in Cleveland area hospitals. All the tests showed no visible physical abnormalities within my system. All the medical staff were leaning towards a diagnosis of an eating disorder and a psychiatric illness, rather than a truly physical problem. Everyone first thought it was only a viral infection, then appendicitis, then pseudo-obstruction. It was not until July 1995 that I was finally diagnosed with a pain disorder.
"I had not been able to eat or drink since I became ill in January. I had a jejunostomy tube placed for feedings, and a gastrostomy tube placed to drain my stomach to prevent vomiting.
"I saw many doctors, had many consultations. The treatment staff would look at records from the other hospitals. I was labeled a psychiatric case, and that followed along with me through these various office visits and evaluations.
"They told me my pain was 'not real,' and that if I really wanted to, 'I could eat and drink.' Nobody believed me when I said, 'My stomach hurts.'
"The team at UCLA was the first ones to believe me when I said I had pain. The pain was indeed real and not something I was making up. This pain had taken over my whole life. I was weak from not eating, unable to attend school, and being tutored at home. It really hurts when someone tells you that you are not having pain, and they don't believe what you are telling them.
"At this point, I had been on tube feedings, TPN (total parental[sic] nutrition), had lost nearly sixty pounds in a little over a year's time, had no energy level, and was just barely surviving.
"UCLA's program consisted of working to decrease the pain with meds, and then initiating an intensive retraining of my body to again accept liquid and solid foods. It began with just licks of different flavors, and gradually led to the removal of all my tubes for feedings and drainage.
"They work individually with families, working with only one patient and family at a time, so you have their individual attention to your needs and the needs of your family. They develop a plan very specific to just you. They do their work on both the medical floor, stabilizing the patient as needed, before completing the remainder of the program on the psychiatric unit at NPI.
"NPI is quite a frightening place. It is the only area they have to work with their pain patients. The transition from the medical side to the psychiatric side was very difficult for me. I didn't feel I really belonged there or fit in with the type of patients treated there. I know for myself, I felt that being a psychiatric unit made me feel like others were thinking I was 'nuts.'. It was very hard for me to understand why things needed to be done there.
"I realize now that it is the only place they can incorporate all the aspects of treatment, including school, recreational therapy, occupational therapy, along with the medical and psychological management of the patient.
"I don't think I would have ever gotten better in Cleveland. When you're just a kid and people keep telling you 'your pain is all in your head,' it really makes you only feel worse.
"UCLA's ability to communicate and work with my family and me really is what got us through this entire ordeal. It was two very long years of disbelief, anger, and frustration for all of us.
"Today, nearly four years since I first got sick, I am doing very well. I am half way through my junior year of high school, and have been able to pick right up where I left off. I no longer have pain, am able to eat most things, and my weight has stayed pretty constant. I look forward after high school to pursuing my goal of becoming a doctor. I hope I can be as caring and knowledgeable as Dr. Zeltzer and Dr. Bursch and their staff as they have been with me."