14-year-old Katherine

My journey began in the spring of 2004 with migraine type headaches. It was the end of my seventh grade year, and the pain was making it difficult for me to concentrate. After 3 months of weekly, massive headaches, an MRI revealed that I had a large arachnoid cyst in the back of my head. In September 2004, I had my first of six brain surgeries. The pain generally went away after each surgery, but complications arose, and I was back in the hospital. The worst was a month long stay when my shunt became infected and led to a bowel resection.

By the summer of 2005, when my pain once again returned, many teams of doctors were not able to figure out the cause of my latest pain. The cyst appeared to be draining well, and there was no obvious sign of increased intracranial pressure or infection. I just had this horrible head pain, which was exasperated by any sort of movement, and made me sick.

When I was referred to the UCLA Pediatric Pain Program I was desperate for someone to help stop the pain. As I started my freshman year of high school, I found that I was unable participate in any of the activities I had looked forward to, and could rarely complete a full day of classes without being overcome by dizziness and pain. In October 2005, based on the recommendation of the pain program, I started weekly hypnotherapy sessions with Kathryn dePlanque, and biofeedback/physical therapy sessions with Diane Poladian. These therapies helped me get through what turned out to be the hardest months of my life.

In hypnotherapy I learned that no matter how bad my pain is I can get through it, as long as I relax and put my mind to it. The first day I went to hypnotherapy I was nervous since I didn’t know exactly what to expect. I thought that it would be like a Vegas show where the girl says, “You’re getting sleepy.” None of my wild ideas were right, and Kathryn is definitely not a Vegas girl. She truly cares about her patients, and designs sessions that meet their individual needs. Kathryn taught me many different skills to help me deal with the pain, and has always been there when I need her.

I found out that I was really good at guided imagery, and to my surprise, it got me through my worse times. The more I went, the better I got at a variety of techniques. Sometimes Kathryn and I went to the beach, and other times we went to the clouds, but no mater where we went, I found myself very relaxed and reenergized when my session was done. I was able to use these skills at home and in school, and found them especially useful during medical procedures, including my last brain surgery in March 2006.

During one particularly painful procedure, I found that I couldn’t take myself to my “Happy Place” alone. To solve my problem I visualized myself at Kathryn’s house, and had her lead me to the clouds. I could actually feel a cool breeze on my face, hear her answering the door, and feel her giving me a big hug. I could also feel myself petting her cute and playful dog Ginger.

Another great hypnotherapy session was when guided imagery took me to Disneyland. It was a really tough day and I just wanted to become happy. During my appointment, Chris (craniosacral massage therapist) and Kathryn were working together. I could feel myself on the rides, and hear the music and the laughter of kids. The thing about hypnotherapy is that you don’t just see your “Happy Place”, but you can also feel it and smell it.

Multiple brain surgeries, and undiagnosed high intracranial pressure, really messed up my pain system. However, the use of guided imagery, along with biofeedback, physical therapy, and some very talented doctors who never gave up, has helped me get my life back.

16-year-old Jessica, from Ohio

"My pain problem began…with lower right-sided abdominal pain…nausea, vomiting, and diarrhea. I had numerous tests done in Cleveland area hospitals. None of the tests showed 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 [six months later] 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. 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 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 parenteral 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 Pediatric Pain Program consisted of working to decrease the pain with medications, 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 the medical floor, stabilizing the patient as needed, before completing the remainder of the program in the psychiatric unit at the Neuropsychiatric Institute…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 felt that being in 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.

"The UCLA Pediatric Pain Program’s ability to communicate and work with my family and me 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 halfway 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, Dr. Bursch, and their staff as they have been with me."

18-year-old Jennie

18-year-old Jennie reflects, below, on when she was 10 years old and had CRPS and was in a wheelchair because her legs hurt too much to walk:

I have an older brother and an older sister. It was very difficult. My brother was a freshman and my sister was going off to university. It was an important time in their lives and a lot of my parents’ attention was focused on me, and I was completely dependent on them for my movement…I couldn’t do anything on my own…I couldn’t go to the bathroom on my own. I think there was some resentment, definitely, but they never showed it. But I am sure it was difficult for them to accept.

We went to family therapy. It was difficult. But the sessions were helpful. It made my parents more aware that my brother and sister needed extra attention. It was an opportunity for me to tell them what I was going through, at a time when it wasn’t an argument or a fight. It was Ok for them to say, I am angry that this is happening.

I think one of the reasons I have recovered is because of my parents. My parents gave me my space and independence as much as they could. We had just moved to California from Canada two years earlier and all our family was in Canada, so they didn’t have a support system…to get a break from things. They were extremely patient, they never blamed me, they understood I was in pain.

As much as it was a difficult time in my life, if I could, I wouldn’t change a thing. I consider that I am the person I am today because of what I went through. I have an incredible relationship with my parents, especially my mom, because we spent so much time together…we went through so much emotionally and physically together…that it’s just a really special relationship.

I am studying psychology and am debating whether I want to go to medical school. It’s kind of funny, because at the time I hated the psychologist, she was the tough one. Getting me to talk was torture. I was the kid who was the pleaser. I didn’t want to cause any problems. I didn’t want to talk about the things that were bothering me…my depression, or my anger. Those are the things I needed to do. I kept a diary as a release. I didn’t keep track of improvements, because then I felt bad, like I wasn’t trying hard enough if I regressed a bit. But having a place to release emotionally was helpful. At one point I was keeping track of how many steps I could do on the crutches and I really didn’t like that. If I had a bad day it ended up stressing me out more if I was keeping track. There’s such a fine line between encouragement and pushing.

Luke, now in his late twenties

I was diagnosed with Juvenile Rheumatoid Arthritis when I was twelve years old. My symptoms ranged anywhere from fevers, joint pain and stiffness to weight loss, chest pain, anemia and even joint damage. I wish I could say that I am exaggerating but rheumatoid arthritis is simply a miserable disease with no cure whatsoever.

Rheumatoid arthritis is a chronic, auto-immune disease that can affect anyone at anytime in their life. Because it is systemic, it can affect the entire body including the organs, glands, the lymphatic system, along with the joints and muscles. Unfortunately, I suffered through all of these symptoms and probably even more. I took high levels of medication for years because the inflammation in my body just wouldn’t go away…

…I struggled for more than ten years to find ways to live with this disease. The only answer anyone ever came up with was to just take more medication. I’ve learned first-hand that this is really no answer. I can honestly say I had just about given up when one day my doctor suggested I should try practicing yoga. My first instinct was to laugh. No way could this ancient practice possibly help me. Miraculously, knock on wood, I have been in remission for almost five years. I don’t think it is a coincidence that this is also how long I have been practicing Iyengar Yoga. I know for a fact that Iyengar Yoga is controlling my symptoms and controlling my disease. I know there is no cure, but it is amazing what Iyengar Yoga has done for me. I have no idea what I would do without it.

Nine-year-old Abe

I used to get scared to go to sleep at night because I knew my head would keep hurting and I wouldn’t want to be alone cause of the pain. Then Erin [Erin Wilson, the pain program massage therapist] would come to our house and rub my head and back and that made my head stop hurting. My mom used to try to rub my head but she rubbed too hard and it hurt. Erin taught my mom how to do it just right and that felt sooo good that I went right to sleep.