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Summary of the Case
Detailed Case History

Our daughter, DD, was a healthy child prior to January 2008, when she turned 7½ years old. On the afternoon of January 23, 2008 she became sick with a fever that lasted for three days. On the first day of the fever she also complained of a sore throat. Four other children in her classroom were out sick at the same time, at least one of which was diagnosed with strep throat. After the fever resolved we noticed puzzling behavior changes in her. These early symptoms, beginning in late January and early February, included:

1. food restriction: initially no breakfast, then no snacks
2. severely increased anxiety: social anxiety, separation anxiety, anxiety over being late to school (insisting on waking 2 hours before school so she wouldn't be late)
3. emotional lability/defiance: many tantrums (including a screaming tantrum ½ hour before her fever started on Jan. 23), "difficult” behavior, irritability, lots of defiance
4. social withdrawal: she stopped playing with neighborhood children and children at school
5. touching rituals: sucking in chest and feeling ribs and spine
6. headaches: including ocular migraines when she saw "ghosts” and iridescent bubbles

On Feb 21st, DD's symptoms worsened after a tooth extraction (for orthodontic reasons). All of her prior symptoms intensified and she exhibited:

7. vocal utterances: a grunting/soft verbal tic
8. motor abnormalities: a lack of smoothness in her fine motor skills, increased clumsiness
9. demanding/controlling: irrational demands about things to be done in certain way. Needed parents to stand or sit. Became very controlling.

Note: on March 1st, we had a sleepover at our house. Four days later, one of the friends (10 years old) was diagnosed with GABHS (had a high fever, sore throat and cultured positive).

DD’s symptoms worsened after a second tooth extraction on March 7th. At the time, we wondered if this was related to a reaction to nitrous oxide, however, in retrospect we believe colonized strep was released into the blood stream. Her symptoms worsened to include:

10. OCD behaviors: insisting that we go through doorways in a certain way, contamination fears, multiple rituals that had to be completed in particular order.
11. anorexia nervosa: severe fear of gaining weight, distorted view of body.
12. complex arm motion: an unconscious complex movement of the right arm touching ribs, chest and then bottom of chin with back of hand (video available).
13. measurement rituals: a complex measurement of arms, legs, stomach which had to be completed in a particular way (video available).
14. depression and suicidal statements: declarations of needing to be killed.

DD became obsessed with her weight. She was terrified of weighing more than 50 pounds. She exhibited compulsive questioning rituals with each meal, "Will this make my stomach grow?"... "Does this have sugar in it* (see note below)... "Are my arms bigger than Sibling's?" (Sibling is her 5-year-old sister). DD would study herself in the mirror, weighed herself many times a day, called her muscles fat, and was sucking in her chest and feeling her ribs and spine. Her drawings of people became distorted with heads oddly shaped and distorted bodies. Her weight plummeted as she would eat no more than 1 small meal per day. When asked why she was not eating, she'd answer "so when I do eat I won't get over 50 lbs." We disabled the scale and DD became obsessed about getting a new scale.

*Note: DD's obsession with sugar appears to have been triggered by a school Scholastic Healthy Eating handout which included a chart with the sugar content of various foods (soda, ice cream, etc.). She kept this handout in her back pack for many weeks. As parents, we have never expressed concern regarding the sugar content of food, aside from asking her to brush her teeth after eating candy.

By mid-March DD developed complex measurement rituals, had movement compulsions, and involuntary arm shakes with increased clumsiness and illegible handwriting. Measurement rituals included encircling her legs with her fingers to ensure her legs would "fit", measuring her wrists, and measuring the distance from her back to her stomach. This ritual was extremely pronounced during meals and she would have to stop and repeat the ritual if she "got it wrong."

On March 15th, at her pediatrician's office, she was psychotic with suicidal statements (she was inconsolable and was screaming "I need to die", "I need to be killed", "Please kill me"). She also emphatically stated many times at home that she would "rather die than eat breakfast" and that she considered herself to be a "bad person." When asked why, she said she was bad "because she was in speech therapy." DD was visibly depressed.

She was hospitalized on March 20th at LPCH comprehensive care (inpatient eating disorder clinic) for malnutrition with hypothermia and hypotension. She had dropped 15% of her body weight in 2 weeks. Her admission weight was 19.5kg; height was 122cm. The provisional psychiatric diagnosis was PANDAS induced OCD/Anorexia Nervosa. Sedimentation rate was normal. CBC was normal with exception of eosinophils (0.38). Her UA showed 3+ Ketones. Initial EKG was abnormal with elongated QTc interval. Cultures were positive for GABHS (throat and perianal). Interestingly, despite positive culture and likely infection since January, DD's ASO and anti-Dnase-B were not elevated relative to norms [ASO (39, school-age children ref. range < 166 IU/ml)) and anti-Dnase-B (149, expected value < = 400)]. She was started on boost therapy (re-feeding) for Anorexia Nervosa, Klonopin (0.75mg) for anxiety, and on the 3rd day Augmentin for strep and Lexapro (5mg) for OCD. DD was able to drink Pediasure provided it was called "medicine" and not "food."

24hrs after Augmentin was started, DD's mood improved dramatically with her drawings returning to normal proportions. It was as if a cloud has passed and she smiled for the first time in a month. With encouragement she was now able to take full meals. She still had compulsions and rituals associated with eating, but was satisfied with one round of questions rather than continuous checking.

At this same time (March 24), a rapid strep test on her asymptomatic 5-year-old sister Sibling, was positive. Sibling was started on Augmentin (10 days rx) but received 7 days as she developed a rash after 1 week on the antibiotic (see below).

DD was released March 27th with stable vital signs. Weight was monitored at LPCH outpatient ED clinic. Psychiatric monitoring and CBT was started with a private practice pediatric psychiatrist specializing in OCD and ED. Lexapro was increased to 10mg to help OCD symptoms. Klonopin was tapered off over 8 days. On the theory of PANDAS, DD was started on prophylactic antibiotics, Amoxicillin 250mg BID. We were also trying to prevent re-colonization by eradicating GABHS in sister.

By April 2nd, Sibling presented with a rash that was thought by pediatrician to be viral (appearance like Rubella rather than Scarlet Fever). Augmentin was discontinued as a precaution. Sibling was cultured negative for strep.

On April 14th, Sibling presented with shingles and recultured heavy positive for GABHS. Sibling was given 5 day course of azithromycin for GABHS. Her throat culture was negative 3 weeks later (May 15th).

On April 28, a throat culture on DD for GABHS was negative. As she was still on Amoxicillin at that time, we suspect it was a false negative culture. Titers were repeated and were even lower than the previous month [ASO at 28.1 and anti-Dnase-B was < 60]. Different laboratories were used to run tests so comparing tests is somewhat suspect; however, there was no elevation despite positive cultures on March 23rd.

Overlapping with this time, DD had dilated pupils, increased defiant behavior, and greater clumsiness. Due to concerns that some of these symptoms might be from Lexapro (akathesia, possible serotonin syndrome), Lexapro was discontinued in mid-May. DD had significant withdrawal symptoms (headache, sweating, abdominal discomfort, flu-like symptoms, anxiety, "zaps", and nausea). Pupil dilation disappeared but anorexia nervosa symptoms returned in full force. DD displayed a renewed obsession about weight and the return of extremely restrictive eating. DD continued to exhibit weight loss ( -0.5 lb/wk). Prozac (5mg titrated to 10mg) was started to soften withdrawal. At this time, Amoxicillin was temporarily discontinued while she received Cefuroxime 250mg BID for ten days. There was no apparent improvement in symptoms on the Cephalosporin. We also gave DD 200mg of Ibuprofen several times during mid-May and we did notice a temporary improvement in mood and interest in food after receiving this NSAID. Often she fell asleep shortly after receiving the Ibuprofen.

By June 1st, DD was exhibiting significant weight loss, suicidal statements, and significant contamination fears. She did not wash her hands for 3 weeks in May because "we wanted her to" and "because she saw ghosts coming out of the tap." On the theory that DD's strep was intracellular (i.e., not reachable by Penicillin/Amoxicillin) and because Sibling's strep was eradicated on Azithromycin, DD was started on Azithromycin 250mg/daily. DD's mood improved on the 5th day of Azithromycin. We also added a probiotic. Substantial improvement was seen on the 9th day of Azithromycin with Anorexia Nervosa symptoms disappearing by the 15th day. By July 4th, verbal tic and all OCD symptoms resolved. By July 30th, movement disorders/measurement rituals resolved. DD also received Ibuprofen, usually 200mg every morning from mid-June until the end of July as we felt this relieved some of her symptoms. DD is still on 10mg Prozac and 250mg Azithromycin daily, along with a multi-vitamin and probiotic.

DD remained symptom free for the remainder of the summer and September. In October we noticed a mild increase in tantrums and fine motor abnormalities, vocal tics, with occasional "measurement" ritual movements, despite still being on Azithromycin. During the 3rd week of October her asymptomatic sister once again cultured positive for GABHS and received another 5 day course of Azithromycin. After Sibling's course of antibiotics, DD's symptoms improved. Two weeks later, some fine motor abnormalities (hand tremors) are reappearing. A repeat throat culture of Sibling was negative (3 weeks after her Azithromycin course). According to staff at DD and Sibling's school, they are seeing lots of strep this year.

Retrospective:
Prior OCD incident in 2005:

Sibling had an upper respiratory infection/ear infection on 2/24/05 that was treated with a 5 day course of Azithromycin. On 3/03/2005, DD had sudden onset daytime urinary frequency which preceded a high fever by 2 days. DD was not treated with antibiotics as no bacteria was found in urine. No throat culture was done. Five days after that, Sibling developed a high fever and vomiting. Around this time, DD also developed compulsive hand washing and worried about swallowing a fly. (A neighbor's child was very ill and died in June. DD was quite worried about getting sick.) After several weeks these behaviors eventually subsided.

Interestingly, neither DD nor Sibling had been cultured for GABHS prior to the March 23rd, 2008 tests. This is true despite Sibling having almost 20 ear/upper respiratory infections in 4 years and DD having spiked fevers coincident with Sibling's symptoms. We now realize that neither Sibling nor DD present with an inflamed sore throat when they do culture positive for GABHS. While carriage is possible and might explain low titers, it appears that an imbalance to carriage (tooth extraction, treatment with antibiotics, other flora/strains) do have some correlation with behavioral events.

In discussion with Dr. Ed Kaplan on latest GABHS research, he comments that "carriage remains an enigma" and is "unlikely as benign as originally thought."

CASE #2 – Girl, Age 7          January 2008
Sunnyvale, California          Treatment: Prophy. Azithro

DETAILED HISTORY

History of Present Illness:

DD is an 8-year old female who was healthy prior to December 2007. In Feb 2008, she exhibited food refusal with acute dramatic decrease in food intake following tooth extractions the week of March 7th. By March 13th, she had developed a vocal tic, exhibited significant contamination fears (wouldn't wash hands), was seeing "ghosts", obsessing about being "fat" and worrying about being "late." She also developed complex measurement rituals, had movement compulsions and involuntary arm shakes with increased clumsiness and illegible handwriting. On March 15th, at pediatrician's office she was psychotic with suicidal wishes ("I need to die", "I need to be killed", "Please kill me").

She was hospitalized on March 20th at LPCH comprehensive care for malnutrition and received psychiatric consult. The provisional diagnosis was PANDAS induced OCD/Anorexia Nervosa. Sedimentation rate was normal. Differential CBC was normal with exception of elevated Ketones (3+) and eosinophils (.38). Initial EKG was abnormal with elongated QTc interval. Cultures were positive for GABHS (throat and perianal). She was started on boost therapy for Anorexia Nervosa, Klonopin (.75mg) for anxiety, and on 3rd day Augmentin for strep and Lexapro (5mg) for OCD. 24hrs after Augmentin, her mood improved and with strong encouragement was able to take meals. She still had compulsions and rituals associated with eating.

DD was released March 27th with stable vital signs. Weight was monitored at LPCH ED clinic, with psych monitoring and CBT with psychiatrist. Lexapro was increased to 10mg to help OCD symptoms. Culture on sibling showed asymptomatic GABHS infection. On theory of PANDAS, DD was put on prophylaxis Amoxicillin while trying to prevent re-colonization by eradicating GABHS in sister.

Despite Augmentin, sister re-cultured positive in mid-April. Sister was given azithromycin and culture was negative at 3 weeks (end of May). Overlapping with this time, DD had dilated pupils, increased defiant behavior, and greater clumsiness. Psychiatrist and neurologist felt increased symptoms might be from Lexapro (akathesia). Lexapro was stopped and DD had significant withdrawal symptoms (headache, sweating, abdominal discomfort, flu-like symptoms, anxiety, "zaps", and nausea). Pupil dilation disappeared but nausea led to food refusal with increased obsession about weight. DD continued to exhibit weight loss (.5 lb/wk). Prozac (5mg titrated to 10mg) was started to soften withdrawl.

By June, DD was exhibiting significant weight loss, suicidal statements, significant contamination fears. On theory that the strep was intracellular (i.e., not reachable by Penicillin), DD was given Azithromycin propholaxis for 30 days. Substantial improvement was seen on 9th day of azithromycin with Anorexia Nervosa symptoms disappearing by 15th day. By July 4th, verbal tic and all OCD symptoms resolved. By July 30th, movement disorders/measurement rituals resolved. DD remains on 10mg Prozac and 250mg azithromycin. Provisional diagnosis is PANDAS or atypical Sydenham Chorea.

Jan 23 2008
DD had a major tantrum (screaming at preschool about 1 hour before we noticed she had a fever on the afternoon of 1/23). Another parent remarked that Her behavior was "very out of character".

Jan 23-28th
Likely strep infection, high fever, 5 kids sick in class on the 24th, 1 cultured positive (that we know of) for strep.

Feb 1st-20th
Emotional lability, separation anxiety, social anxiety, irritability, "difficult" behavior, tantrums persisted throughout Feb. DD stopped eating breakfast and then afternoon snacks. She started to insist that she be woken up 2 hours before school started.

Feb 21st
Tooth extraction (with nitrous oxide), significant exacerbation of symptoms and restrictive eating.

March 5th
Called pediatrician -- thinks it might be social anxiety and refers to psych, twitch/jerky movements.

March 7th
Second tooth extraction (with nitrous oxide), even higher exacerbation of symptoms, verbal tic, restrictive eating worse (one meal/day), begins measurement rituals. DD demonstrates "classic" anorexia nervosa symptoms.

March 10th
DD wakes up at 4 and 5 am, anxious about being late for school. Lisa calls pediatrician on 3/11 because DD is barely sleeping or eating.

March 13th
Has dropped 7 lbs (15% of body weight since Mar 1st).

March 17th
Pediatrician office, suicidal statements and full out psychotic events asked to return in 3 days.

March 20th
Observed at pediatricians office, contamination fears, verbal tic, barely able to walk to car. Concerned about vitals and malnutrition.

March 21st
Take to LPCH eating disorder for malnutition (secondary diagnosis is anorexia nervosa). Our theory is PANDAS and we request ASO and Anti-DNASE B, throat culture (positive on 3/24).

March 22nd
Start on refeeding therapy (pediasure), Klonopin -- increasing OCD, contamination fears, demanding behavior.

March 23rd
High OCD behavior - organizes room, highly demanding, extreme separation anxiety.

March 24th
Cultured perianal (positive for strep on 3/26), start augmentin, Klonapin and Lexapro (SSRI).

March 25th
Sister cultured positive for strep. Start Augmentin to clear.

March 25th
Dramatic improvement of behavior -- 2nd day of augmentin. Able to eat lunch, dinner.

March 26th
Dramatic reduction in OCD behavior, still high separation anxiety.

March 27th
Released from hospital, kept on Augmentin and then propholaxis amoxicillin while trying to clear sister.

April 3rd
Sister gets rash (rubella like, does not appear to be scarlet fever), augmentin discontinued on sister.

April 12th
Sister gets shingles (sigh), OCD features growing again, food restriction growing.

April 18th
Sister cultures positive for strep again.

April 19th
Sister starts azithromycin (5 days).

May 6th
Extreme defiant behavior -- pees on doctors floor as defiant behavior. Showing sweating, stumbling, concerned about SSRI.

May 8th
Taken off Lexapro -- headaches, anorexia nervosa returns in full force.

May 16th
10 day course of cefuroxime -- in case strep is resistant to amoxicillin (no benefit seen).

May 17th
Sister is cultured clear (3 weeks from last postive culture) – looks like azithromycin gets strain.

May 18th
Significant food restriction, start Prozac.

May 21st
Significant weight loss of last month. Approximate loss 1lb per week. Gave advil for headache – saw improvement in mood. Something about NSAIDs?

May 27th
Very concerned about weight loss. OCD contamination fears growing. Separation anxiety hitting hard.

June 2nd
Start azithromycin (5 day course, 250mg/day).

June 4th
Improvement in mood. Eating now lunch and dinner (but no breakfast).

June 10th
Started second round of azithromycin.

June 13th
Dramatic improvement in mood and symptoms. Eating breakfast, lunch and dinner. Contamination fears resolve for first time in 2 months!

June 20th
OCD questions gone. Restrictive eating gone. Eating snacks.

June 21st-July4th
Improvement in mood. Some motion tics still present.

July 5th
Motion tics gone or extremely infrequent.

July 6th-August 1st
Some social anxiety remains. All OCD behavior gone. Motion + verbal tics gone.

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