This is a story about Ruth’s struggle with PANDAS from age 10 to 12½. Because PANDAS is such a sudden and completely debilitating illness, it can lead to significant emotional trauma for children who are at key stages of development. The devastating neurological symptoms exclude PANDAS kids from mainstream activities, at a key stage where confidence and social acceptance are critical to the childs success in life.
Ruth was a shy but sweet and bright child who excelled in school and loved to play with other children. She was somewhat of a perfectionist and anxious about thunderstorms, but never to the extent that these interfered with her schoolwork or social life. She received all her vaccinations without any side effects and was rarely sick except for appendicitis at age 7, for which she had surgery without complications.
Ruth complained to her parents of a sore throat on November 15, 2001. Her parents treated her fever with ibuprofen, and she was well enough to travel with her family for the Thanksgiving holidays. She was not tested for strep since all previous tests, despite frequent outbreaks at school, had always been negative. During the car ride home after the holidays, Ruth began to cry uncontrollably. She was unable to explain her distress and did not sleep for 24 hours straight. The sky had been overcast and Ruth had seemed more anxious than usual during the holiday visit, so her parents contacted their physician the next morning who prescribed Clonipin.
Over the next 2 months Ruth stopped feeding herself, walking to her classes, and socializing with friends. Compulsive behavior such as tapping her feet, taking specific step sequences, not touching anything green became extreme. Ruth stopped attending school in January 2002, when the principal called her parents in tears to say that the teachers could no longer continue to hand feed Ruth at lunch time or physically move her from class to class, and still take care of the rest of the students.
Despite trying several SSRI’s to help with the obsessive thoughts about being “bad” and compulsive rituals, Ruth became anorexic, losing more than 10% of her body weight because “she couldn’t eat because she was bad” and some of her hair fell out. She began to utter squeaks involuntarily and walked with a dancelike waddle. During visit to Ruth’s pediatrician to assess the state of her malnourishment, the Doctor who had interned at hospital in Zambabwe, recognized this as a presentation of “St. Vitus’s Dance” and ultimately diagnosed Ruth’s condition as Sydenham’s Chorea and Tourettes. After some quick internet research and a call to Dr. Swedo, Ruth’s pediatrician did a test for strep titre, and prescribed a daily low dose penicillin.
In January 2002 after several phone conversations with Dr. Swedo, Ruth’s parents took a 10 minute video of her waddling walk, piano playing finger movements and shrill squeaks and sent it to Dr. Swedo. After viewing the video, Dr. Swedo agreed to include Ruth in the clinical testing using Plasmapheresis (PEX).
In February 2002, shortly before flying to NIH, Ruth began to have symptoms of acute depression and suicidal thinking. She cut and hit herself and wrote notes about how bad she was and that she should “go away” or die. The psychiatrist increased her dose of SSRI and added Zyprexa and a sedative.
Once at NIH, the PEX was completed uneventfully. Ruth’s MRI showed clear swelling of the brain and followup assessments were scheduled. No noticeable change in Ruth’s symptoms were observed following PEX.
Prior to leaving NIH Ruth made her first known suicide attempt and drank shampoo (She had always been told not to get it in her mouth…it would make her sick). Luckily, she was fine although this highlighted the frightening change from suicidal throughts to suicide attempts. Wonderfully caring NIH staff took precautions and put Ruth on a 24/7 suicide watch on the psychiatric floor for observation. After nearly an additional week of observation it was decided that Ruth and her mother could return home.
In March through June, Ruth made 5 more suicide attempts and tried to kill her cat and baby sister (to spare them from being in pain). On one attempt, Ruth overdosed on her mother’s allergy medicine accidentally left out, took an ambulance ride to the ER to have her stomach pumped, then spent 2 days in ICU until a pediatric bed in another hospitals adolescent psych unit became available. Ruth made another attempt to overdose on Dramamine she found in an old purse. She also made several attempted to jump out of the family station wagon while riding on the highway, so her parents quickly learned to tape her hands with medical tape during trips in the car. Ruth ate dirt and refuse to wipe properly after using the lavatory in hopes she would catch an infection. Her skin was bloody in places where she picked at it, and her hands were taped into splints to prevent her from scratching her face and eyes. Ruth’s only comfortable venue was the dark bottom of a specific closet that she asked to go in, and the peace of the heavy sedative she was given at night. Ruth’s mother slept next to her at night and had fishing bells installed on the door in case Ruth happened to wake up in the middle of the night and tried to leave the room unsupervised.
Each suicide attempt was followed by a week or so stay in the local adolescent psych wards to provide 24/7 supervision. Ruth was very motivated to return home to her parents so she worked hard to resist the OCD and suicidal thoughts in order to be released from the hospital. Within days however, her parents returned to taping her hands, so she wouldn’t tear her skin, open medicine bottles which were generally kept locked but she was quick, hurt her baby sister, or attempt to unlock car doors while riding to doctors visits. Ruth’s parents alternated work schedules, took unpaid leave after using up all vacation days, but could not quit either job out of fear of losing any health coverage. There were 2 or 3 adults who helped to watch Ruth when her parents could not, but most caregivers were not adequately skilled to care for a suicidal 10 year old. Fortunately other friends and family were able to help care for the couples other children, so they could focus their attention on Ruth as much as possible.
Tricyclic antidepressants and heavier antipsychotic medications were tried, even inducing mild sezures when the doses were increased….with no effect. At this point the Ruth began receiving tutoring from the state’s special education system, as no school was willing to provide a full time shadow for a suicidal student. With no apparent benefit from all the medications tested, Ruth’s parents even considered shock treatments, but decided not to try this until all other avenues had been tried.
At the end of May 2002 Ruth’s parent’s mental health insurance was spent and she qualified for State care at the state child psych unit. Ruth was transferred from the local acute care facility to the state psychiatric ward when one of the 12 child beds opened up. Ruth stayed at the psychiatric hospital from Memorial Day to the end of August, with her parents and special education teacher visiting daily. During that time the psychiatrists weaned Ruth from all medications but the penicillin and sedative, then slowly added in a mild SSRI and anti anxiety medication. Early in August, Nearly 10 months since the onset of her illness, Ruth finally began to exhibit signs of healing. She starting to let the sides of her mouth begin to go up into a smile and the constant suicidal thoughts began to fade. Ruth started to interact more socially with the other children and concentrate on reading or art activities for longer periods of time, without being overcome by obsessive thoughts or compulsive rituals. Her squeaking started to subside when she was relaxed and her walk became less waddle like. Ruth still tapped quite a bit, wouldn’t eat anything green, and thought she was “bad and undeserving” but overall her condition seemed to be improving.
In September 2002, Ruth was enrolled full time in a special school which provided a high level of supervision for children with behavioral disorders. Ruth made dramatic improvement in her ability to control her compulsive behaviors and by January 2003, she was able to transfer to another special school which was more academically oriented, but still provided a high level of supervision for children who were not able to be successful in mainstream schools. At her own request, after approval from her parents and physician, Ruth was able to wean herself off the anti anxiety and SSRI meds. Ruth was able to participate in field trips, sleepovers and birthday parties without any special supervision.
After several meetings and interviews, in September 2003, Ruth was ecstatic, although a bit nervous, to return to the high pressure preparatory school she had to leave a year and a half earlier. She graduated middle school with honors and even was awarded a small college scholarship for patriotic essay she wrote. Ruth continued to take Pennicillin until she was 15 based on her pediatrician and Dr. Swedo’s recommendation.
In 2009, Ruth graduated from an exclusive preparatory high school, president of the Community Action club, accepted to multiple private and state colleges, and planning to spend her freshman year abroad in a competitive international program. Ruth still has very mild obsessive thoughts….what one might call “a perfectionist”, but the skills she learned in behavioral therapy years ago have served her well and she manages stress and anxiety very effectively- in many ways the same way a child with diabeties learns to manage his insulin, or a child with allergies learns to manage her diet. Today Ruth is an extremely popular, joyful, and mature young woman, with no residual symptoms of her illness.