Patient Stories

Jack is a five-year-old who has had chronic headaches since the age of four.  Typically he gets one every other day. When they occur, he cries continually and is usually inconsolable, demanding more and more attention from his mother.  Jack was diagnosed with childhood migraines.  Medications provided by the neurologist gave intolerable side effects with no relief.  Recently, however, Jack’s mother has learned a series of relaxation and imagery techniques, which she and Jack practice together.  When the pain first starts, Jack and his mom lie down together and begin by taking long deep breaths.  Jack’s mom urges him to relax and think about something he likes to do such as playing on a swing in the park.  Jack’s mom begins by describing the sights, sounds and feelings of the park and then asks Jack to describe them and also to notice how comfortable and relaxed he is feeling as he continues to breathe deeply.  After several weeks of practice, Jack is able to relieve much of the pain. He has also discovered that he can sometimes stop the headaches on his own when his mom is not around.

Dr. Lonnie Zeltzer tells the following story about her early experience learning to practice hypnotherapy.  

 

 

 

Jenna, a young woman in her early twenties, came to study with me after being diagnosed with rheumatoid arthritis. Depressed and frightened by the prospect of living with a chronic, debilitating, and painful disease, she came to the UCLA Pediatric Pain Program looking for strategies that could improve her health.  She decided, along with taking the medications recommended by her rheumatologist, to try yoga.

 

In the months leading up to her diagnosis, Jenna’s quality of life had deteriorated rapidly.  In September she was healthy and active, playing volleyball, hiking and rollerblading.  By April, the smallest movements were painful.  She walked slowly with a limp, it hurt to roll over in bed and she needed help to brush her hair.  Jenna experienced pain, tenderness and/or swelling in almost every joint in her body—feet, knees, hips, shoulders, elbows, wrists, fingers, neck, and jaw.  Beth (yoga instructor) wanted her to know that no matter how bad it got there was something we could do that would help.  We might not make the problem go away completely but we could give her some relief. 

We began with mostly passive inversions and passive backbends. She hung upside down on ropes, and lay over chairs and bolsters.  The inversions would help her immune system and the backbends would lift her mood.  Eventually Beth taught her certain poses, like handstand, to give her a feeling of confidence and optimism.  Even for students without health problems, there is something unbelievably exhilarating about kicking up into a handstand.  When Jenna kicked into handstand, she used a slant board under her hand because of the problems she had in her wrists.  She found that the pose actually made her wrists feel better and improved her range of motion.  Soon she was doing standing poses with a quarter round [a wooden block that is a quarter of a circle and is used to ensure proper alignment in the leg] under her foot to help with the pain in her feet, ankles, and knees.  If something in particular was causing her pain, Beth made sure to address it in class with specific poses that brought relief.  Beth also encouraged her to practice on her own at home as she needed to.

 

Over the next several months, Jenna’s health improved rapidly.  By fall, she was walking normally and, by the next spring, she was pretty much back to normal—active and fully functioning. Most importantly, when she experiences pain related to RA, she knows what to do to bring relief, and when she is feeling depressed she knows how to lift her mood.  Iyengar Yoga gives Jenna a feeling of joy, accomplishment, and confidence.

Below is a portion of a letter Beth received from a 14-year-old yoga student:

 

Very early on, I discovered that yoga makes you fix problems yourself.  It also worked much faster than any of the other treatments and the results lasted much longer.  I learned that my headaches were a result of deeper problems and headaches were the way my body let me know something was wrong.  Yoga made me fix my headaches myself, and not rely on medication or a machine to solve my problem.  And if I ever get headaches again, I know what to do. 

Sean Hampton, M.P.T, a longtime physical therapist in our Pain Program (and Director of ADI REHAB) talks about PT in children with chronic pain. 

 

While electrical stimulation can be helpful in treating chronic pain, physical therapists employ many other treatments to help your child get back to an active life.  The therapist may also use manual hands-on stretching and mobilization treatments to help stretch out muscles, joints, and nerves that have become tight over time and with decreased activity.  The therapist must have the ability to make therapy fun and interesting for children.  The therapist must establish a trusting relationship with the child for many reasons.  The child with chronic pain may have seen numerous professionals that may have let him down.  Every chronic pain patient is told “I will help you get rid of your pain.” When the child puts trust and hope in those promises, he may ultimately be let down when the pain does not go away.  When this happens over and over, often with painful evaluations and procedures occurring along the way, the child with chronic pain may start to look at all practitioners with skepticism.

 

Michelle came to see me for severe complex regional pain syndrome (used to be called RSD) of her lower extremity and was very skeptical of all therapists, especially when it came to touching or moving her legs.  She had resisted any movement of her legs with every therapist and was continuing this behavior with me.  I had asked her to bend her knees and Michelle demonstrated virtually no movement with her knee.  I asked Michelle if that was all she could do.  Michelle replied ‘yes’ and wanted to know if I thought that she could bend them more than she demonstrated.  Now, I had seen her move her knees more outside physical therapy.  In this situation, most people and physical therapists may want to challenge a patient like this.  They may choose to tell her that they saw her move her leg more before on her own.   However, because Michelle had lacked trust in her previous physical therapists, she had limited to no success with her therapy in the past. Realizing this, I knew that it was more important to gain Michelle’s trust than to challenge her ability to move.  If I had challenged her perception of what she was able to do or not do, Michelle would have assumed I did not believe her, that I thought she was faking her pain, and she would have grown distant and uncooperative during our sessions.  I simply waited until Michelle had gained confidence in me and in her abilities.  And this approach paid off; little by little Michelle was able to do more in physical therapy, and the more she could do, the closer she came to recognizing that moving her legs was within her control. Soon she was able to acknowledge the leg movements she had been making all along. This was an exciting new discovery for Michelle.

 

Dr Zeltzer tells the story of Karen. 

 

Dr Dreifuss-Kattan, our art therapist, tells the following story.   

 

Joe, who was referred to me through the pain clinic, was a withdrawn, stressed, 16-year-old gifted high school student with severe chronic headaches.  He completed a scribble drawing in the first consultation.  Filling in the colors, he recognized a bird with a huge head, with a red area, a small body and tiny wings.  Joe’s chronic, severe headaches, which had made him dependent on medication, were surfacing unconsciously in the big-sized head of this bird.  Together, we realized how the oversized head made it impossible for the bird to take off, fly to his own place, away from his overprotective mother and the parents’ marital conflicts.  Joe’s love of art and his ability to express his pain through his artwork and also to ‘understand’ his pictures brought him joy and relief.

Tom is a bright and witty 12-year-old with recurring abdominal pain.  His pains reliably occurred every weekday morning when he had to get ready for school.  Tom’s morning pain symptoms often involved crying and screaming.  His pains had caused him to miss significant amounts of school, but usually improved by the late afternoon, at which time he would go to play outside with his friends.  Tom had developed anxieties about going to school, partly as a result of his mother’s belief that the school staff was not sympathetic to his pain problems.  Tom was convinced that he could not be at school and cope with his pain at the same time.

 

The first goal of family therapy was to change Tom’s mother’s perceptions about the school by developing an agreement (a signed contract) among the school principal, nurse, Tom, and his mother, in which Tom would be allowed certain privileges at school (e.g. lying down in the nurse’s office when he was in pain).   In return, Tom’s mother was to get Tom to school every day.  In the beginning, the plan was for Tom to remain at school through first period.  His time at school was increased gradually each week and he received incentives for his ability to cope with being in school such as going outside to play with his friends.  Soon Tom’s mother was able to get him to school and was less anxious about what might happen to him while he was there.  In turn, once Tom sensed his mother’s changing attitude toward the school and he became confident in his own ability to stay at school for increasing amounts of time, he was able to go to school more easily, he became interested in some of his classes, and his pain lessened.

Glenn is a 14-year-old who suffered with headaches.  The headaches were causing him to sleep poorly so that he said that he was always tired during the day.  Sometimes he was so tired that he refused to go to school because he just “couldn’t get out of bed.”   At other times, he said that his headaches were too bad to allow him to go to school.  Glenn began missing more and more school.  When he did go to school, he had two “sort of” friends, the computer geek and the math whiz.  However, he found school stressful, because he had difficulty relating to most of the other kids, whom he thought were all “too dumb.”

 

An evaluation of Glenn indicated symptoms of Asperger’s Syndrome.  He was very smart, excelled in math and computer science, and there were other signs for this diagnosis.  He was very logical and could be very argumentative, often not “giving up” in an argument at home until he drove his parents crazy.  We realized that the stressful part of school for Glenn was the social interaction rather than the academic work.  He was referred for social skills training in a group format so that he would learn some of the social skills that didn’t come naturally to him.  For example, he had to learn how to let others children “be right” some of the time and not argue them to death.   He had to learn how to make eye contact and smile more, especially if other children smiled at him.  He got to practice these skills with other kids similar to him and they all learned together.   An incremental plan was established for Glenn to go back to school full time, and he learned biofeedback to control his muscle tension that contributed to his headaches.  With the combination of biofeedback, social skills training, and a school re-entry plan, Glenn was able to fall asleep better on school nights, awaken more easily in the mornings, and eventually attend school full time.  In the group therapy, he also learned how to participate in school in ways that took advantage of what he was good at—he joined the debate team and set up “mind-game puzzles” on the computer for the school newspaper. (Typically only he and his two other friends could figure out the answers and he loved that!)

Faith is a 13-year-old who had had a successful heart transplant. However, she had many post-operative problems, especially with one of the catheters that carried blood in and out of her body.  It had to be replaced once and she had a lot of painful surgical manipulation in that area of her body.  When she was last in the hospital, before I first saw her, the catheter fell out while she was in the bathroom alone and she started bleeding and became panicked.  Her anxiety rose quickly and the pain circuits relating to her catheter site became “turned on” and she immediately developed severe lower belly pain near the area where her catheter had been.  The catheter was replaced, but the pain continued. None of the cardiologists or surgeons could figure out what was causing the pain even after many tests.  Because they couldn’t find a “fixable” cause, they didn’t know what to do to reduce her pain.  When they gave her typical opioid pain medicines, she would just go to sleep, awakening still in pain.  Fortunately for Faith, these doctors understood their own limitations in pain treatment and referred her to our program. 

 

We diagnosed Faith with post-traumatic stress disorder (PTSD) resulting from her many surgical procedures and especially from the bleeding episode in the bathroom.  The PTSD had caused a change in her neural arousal system so that even low levels of pain were hard for her to bear, and she had flashbacks of the bleeding episode, trouble sleeping, and intrusive thoughts about her hospital experiences.  The pain signals from her catheter site kept sending pain signals to her brain in a neural loop that kept the pain going.  We used one medication to calm her heightened nervous system and PTSD symptoms and another aimed at her nerve hyper-excitability.  We then referred Faith to a psychologist to help her to talk about her stressful hospital experience and to face her fears.  She learned skills to overcome the anxiety she felt when she thought about that experience and, over time, she was able to revisit the hospital ward and feel Ok there.  Currently Faith is almost off all pain and anxiety-related medications.  She is going to school, has friends, and is physically active.  She no longer constantly worries about her heart or being hospitalized.

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. 

 

 

 

Post-Script: Jennie graduated from college and is now a medical student.

 

Angela is a 13-year-old with irritable bowel syndrome that was causing her such severe belly pain that she was unable to return to school after the winter holiday.  She also had a generalized anxiety disorder (lots of chronic worrying about missing school, getting behind, not getting A’s, not being able to make the basketball team, her parents’ health, her father’s job, her sister’s asthma, etc.)   Angela began focusing on her belly pain in the mornings before school and according to her, she “tried to go to school” but was unable to and she worried that even if she forced herself, she would never be able to stay in school because of her pain.  Soon she began worrying the night before school.  All of these worries made her pain worse and worse, and she was missing more and more school, and getting further behind.  Since Angela had been a straight ‘A’ student and was a perfectionist, she worried constantly about getting behind and not being able to get ‘A’s’.  We referred Angela to a psychologist for CBT.

 

The psychologist first helped Angela figure out what kinds of situations made her feel tense and have more pain.  Angela realized that it wasn’t school in general that made her anxious, but some bullies at school who had made fun of her just before the winter break.  She had not been back to school since.  She had identified a significant and specific problem that was stressful for her.  Angela learned some strategies to reduce her anxiety when she thought about going to school and seeing these students.  She learned a technique known as “thought-stopping.”  When she began thinking catastrophic thoughts (e.g. they are going to laugh at me and get everyone in the school to laugh at me, she would tell herself, “stop…this is not going to happen…I can handle seeing them.”)  Angela also learned some breathing exercises to calm herself when she felt her heart beginning to race or her hands becoming sweaty.  She developed a plan for what she would do at school when she saw the other students and figured out how she might react in a couple of different scenarios, depending on how the girls behaved toward her (e.g. if they looked at her, laughed, pushed her, etc.)  Angela practice this plan in her mind first and then role-played it with her therapist.  She was able to go to school and, even though the girls laughed at her, as she had feared, she was prepared for it, and she was able to ignore them and feel OK.  This made it easier for her to return to school the next day.  As her stress about going to school lessened and she felt more competent, her belly pain also got better and she was able to easily get caught up in the work she had missed and continued to make all A’s.