Back to Main Case Histories Page

Summary of the Case
Graph of the Symptoms
Detailed Case History

THE SUDDEN ONSET STORY
Prior to onset of PANDAS, our son was an even-tempered, compassionate and patient child. He was focused and able to complete tasks in a confident, calm and coherent fashion. He had a strep infection in April 2007 was treated with antibiotics (Azithromycin due to sudden allergic reaction to penicillin and Augmentin) and seemed to resolve. Approx. 3 weeks after the infection, in early May he began to seem mildly-hyper, mildly defiant, and mildly fearful. I was irritated with him but imagined he was becoming a "big boy" and was over exuberant about summer-time in a new neighborhood (we had recently moved).

August 24, 2007 – I escorted him to his first day of Second Grade and a severely autistic girl, much larger than he, ran towards us screaming and kicking. We were surprised and frightened. Her parents held her while she screamed for more than 20 minutes. His classroom, the other parents and I were surprised – to say the least. I believe this event created a dramatic adrenalin rush that "popped" the PANDAS episode into IMMEDIATE full swing.

At this point, Son's mouth fell open and he stared straight ahead. I hugged him thinking he was frightened. He spoke but in a daze, "I'm ok mom, I feel a little weird, but I'm okay." That day he came home from school, and fell to the street in front of my house, grabbing his head. "I can't decide what to do. I don't know if I should walk forwards or go backwards or go see a friend or stay home," he cried and yelled at me in a confused state while on the sidewalk for about 30 minutes. He finally calmed and we slowly walked home.

Our son came into the home and we turned on the t.v. to relax. Immediately he became terrified of the t.v. "It will kill me! It has radiation!" He turned off all the electronic devices in our home. This type of contamination terror gradually escalated and involved: sky, animals, birds, walking, the ground, bats – etc. He had terrible separation anxiety when I left him or when he went to bed. He would kiss me 20x, "I love you, don't forget." Variations of this continued for four months (see detailed summary for further explanation).

ESCALATING PHYISCAL SYMPTOMS & MEDICAL PROFESSIONALS REACTION
The mental torture then escalated to physical, joint, sensory pain that finally brokered him a deal with the MRI at Stanford U four months later. It showed acute sinusitis and enflamed Virchow-Robin Spaces around the basal ganglia. Prior to that – the psychologist, pediatrician –thought he had become spontaneously tempermental. I had no medical training – so I assumed they were correct. Because the NIMH website is unclear about various diagnostic tests for PANDAS, at this point STILL no further testing of any kind was done by Stanford during this acute time.

I had him mirrored at school by the psychologist and she found he was quiet and compliant and ate lunch by himself. He later told me he kept away from friends so he wouldn't "go wacky."

He suffered no intellectual loss but would get frustrated and cry and become angry when doing homework. Unfortunately, he had the strength of character to "keep it together" at school and would come home and come apart – rolling on the ground, trying to climb the walls, screaming, crying – four hours at a time. Because of his ability to keep it together – the doctors and school assumed our family was negligent in some way.

ARRESTING THE INFECTION ABX and IVIG
Four months after the acute onset, ASO Titers were done showing a "normal" level of 500. The D-nase was mistakenly NOT done or lost by lab. (One year later d-nase was done and was elevated 350; Aso-Titer after one year diminished to 300's.)

An earache caused us to give him Azithromycin in December. In 10 days all his psychological symptoms were down by 80%. We continued on with prophylactic abx. Despite this the improvement w/abx - mood lability and fears of death or contamination continued when he was around strep – microbially (see graph).

One year from the ONSET: IVIG was administered (9/08) by Dr. Kovacevic. Son felt, and the nurses, Dr. K and I saw a complete resolution of all anxiety symptoms within 3 hours of the treatment. Antibiotics will continue daily. Within 3 weeks he had a "turning of the pages" event, as Dr. K calls them, and he raged and yelled and was confused for about 1 hour. He understood the episode, he understood it was PANDAS and not him. This rise and fall in mood, fear anger continued for 10 weeks.

Sudden anger and volatility has become an increased issue. We believe this is largely due to brain inflammation/encephalitis-like in nature. We learn from Neurologists that anger is a common component in children repairing from encephalitis and that in time it will probably diminish.

At week 12 post-IVIG he was still battling mild fears – now it is fear of death or abduction by aliens – and having mood lability issues. He has some cognitive issues also during this time and begins to cry or slam his fists when doing homework. On a scale of 1-100 he is at 90%. Added IVIG benefit – all chronic croupy-like cough and all allgeries - GONE.

6 Months Post-IVIG: Our "normal" child is back. It is good to get to know him again. When he is tired ONLY – he does still have a quick temper and will explode.

7 Months Post-IVIG: Exposed during playdate to strep. Has re-exacerbation. Terror of school; crying and locking himself in room each morning. Stop onset with 30mg 5 days of prednisone.

8 Months Post-IVIG: Anxiety continues and microbial exposure to strep seems to agitate. Will do 800mg/1kg dose of IVIG (about ½ the dose used in the first round). Think this will give him the boost he needs to stop this mild reactivity and baseline attitude change which is irritable and rude at times; rages every other day that last 5 minutes to 1 hour. He is still MUCH improved compared to Acute Onset of PANDAS—just not predictable in nature anymore.

FAMILY HISTORY

Mother and great- grandmother – relapsing/remitting multiple sclerosis.
Mother's brother and Grandfather – Asberger-like brilliance and poor social skills.
Father's mother and sister – rheumatic fever and scarlet fever.

DETAILED HISTORY

The graph attached shows 1) antibiotic doses and increase/decrease in symptom severity, and 2) microbial strep exposure is with increase in Y-BOCS (Yale-Brown Obsessive Compulsive) scores as well.

Pre-acute onset

January to April repeat Otitis Media issues. Repeat antibiotics required. Documented strep infection in April 07 w/ subclinical OCD comments made at that time.

Acute Onset Phase – August to December (w/out abs)

August 25, 2007 Onset of acute physical/psychological symptoms w/severity climbing thru December. No presence of sore throat, etc. no swab taken or blood tests done

Management Phase – January to September (w/abs)

Ear infection in late December precipitated use of Azithromycin. Immediate cessation of symptoms were noticed with in 5 days with dramatic results within 10 days.

The graph shows our adherence to the "NIH" guidelines for 2-week antibiotic use only. However, a clear nexus between increased physical and psychological symptoms and the withdrawal of Azithro caused us to continue to administer the antibiotics.

Final Phase – IVIG – abs 250mg Keflex or Azithromycin daily for one year

Finally, IVIG was administered on 9/25/08 because it became apparent to my son – who by this time could recognize the onslaught of PANDAS – and my husband and I that this relentless cycle of terror and demoralization had to stop.

Post IVIG – 8 months – May 2009

A number of other children who did IVIG (1.5 grams/1 kg) when we did had 100% improvement. We have remained at 90% improvement with intermittent reactions to strep at school. Doing an additional smaller dose of IVIG as we approach Summer months – hoping this will give his system a break from strep and time to absorb (800 mg/1 kg) the new antibodies. Think this may stop his continued reaction to strep. All symptoms gone June 2009.

DETAILED HISTORY

Our Son 2007/08          10/17/08

4/13/07 – Strep treated with Azithromycin due to allergic reaction to 1/07 and 2/07 otitis media
8/23/07 - Infection w/allergic reaction to Augmentin and penicillin.

1. Intermittent hyperactivity – running, talking, jumping.
2. Mild defiance.
3. Intermittent Fear of bridges (we had crossed 100’s of bridges all his life).

ACUTE PHASE – August to December 2007 w/out abs

8/24/07

ACUTE ONSET Sudden falling to the street after school holding his head and crying and panic.

Physical Symptoms

1. Unable to move for one hour– confusion
2. Hyperventilation.
3. Eye dilation
4. Crawling on the floor – panic (daily)
5. Disorientation (daily)
6. Decision making impaired – can’t remember how to dress, general confusion.

Psychological Symptoms

1. ear of electronics – t.v., computer – radiation poison or sucking brain out. (daily)
2. Fear of making decisions (daily)
3. Defiance – tantrums (daily)
4. Hyperactivity – non-stop talking, movement. (daily)
5. Separation anxiety at bedtime and in daily life. (daily)
   MID-SEPTEMBER:
6. Ritual kissing (20x) at night and going to school. (daily)

10/1-30/07 Physical Symptoms

1. Crawling and rolling.
2. Mild aggression – defiance, growling, charging
3. Eye dilation.
4. Can no longer swim. Cannot coordinate arms and legs and face.

Psychological Symptoms

1. Obsessive handwashing – 30-50x at home, 10x at school (no mention of contamination)
2. Separation Anxiety – bed and school times
3. Racing thoughts – calmed by handwashing.
4. Above fears continue.
5. Night Terrors begin.

11/14/07 Physical Symptoms

1. Eye dilation
2. Joint pain in legs and hips.
3. Sensory decline – taste and vision.
4. Adventitious movement – hand slamming, jumps, kicks

11/14/07 Psychological Symptoms

1. INCREASED aggression.
2. INCREASED hyperactivity
3. Face alteration – as if crazed older man – not child-;like.
4. Kick car seat, body slamming – as soon as out of school. (daily)
5. Swearing and yelling
6. Fear of contamination – fungus, cigarette butts, shoes, dirt, fertilizer
7. Kissing rituals continue
8. Separation anxiety
9. Night terrors
10. EXTREME rigidity – perfectionism
11. Fear of going out – isolates at school
12. Fear of death. Suicidal comments.
13. Sexual disinhibition.

12/1-20/07 Physical Symptoms (12/11 – Prozac 5mg daily)

1. Numbness of digits
2. Intermittent leg and feet pain
3. Hearing sensitivity
4. Taste – loss of taste MRI DONE – ACUTE SINUSITIS
5. Snakelike chorea
6. Extreme facial grimacing, eye dilation, tongue extending

12/21/07 EARACHE – 10 day AZITHRO

Psychological Symptoms

1. Decreased defiance
2. Decreased perfectionism

1/02/08 NO AZITHRO for next 10 days

Psychological Symptoms

1. No defiance.
2. No contamination comments.
3. No separation anxiety at bed or terrors.
4. Handwashing diminished by 50%

Physical Symptoms

NONE

1/12/08 Physical Symptoms INCREASE AZITHRO for next (5?) days

1. Hyperactivity increase
2. Frequent Urination (10 x or more daily)
3. Eye dilation
4. Facial distortion (grimacing, tongue extended)

1/12/08 Psychological Issues 250mg daily AZITHRO thru 2/26/08

1. Fear of illness
2. Separation Anxiety at Bedtime Only
3. Handwashing at 50%
4. Anxiety about various issues on news at school.

1/15/08 Physical Issues – NONE (Discontinue Prozac)

2/01-26/08 Physical Issues – NONE

Psychological Issues

1. Anxiety Lessening – Sucking on Shirt and fingers for comfort
2. Perfectionism and Controlling NO MORE HANDWASHING

2/26/08 TONSILECTOMY/ADNOIDECTOMY – 3 days Prednisone

CESSATION OF ALL PSYCHOLOGICAL/PHYSICAL ISSUES for One week.

3/08 Physical Issues AZITHRO decreased to 500mg weekly

By 3/14

1. Tourette’s like – clicking, whistling, finger snapping (2 hours daily)
2. Hyperactivity increases
3. Insomnia issues

Psychological Issues

1. Defiance seen in transitions
2. Increased mood lability – crying, anger, confusion
3. Begins shirt and finger sucking again

4/08 Psychological Issues begin to Increase Intermittent Fever

1. Fear of fungus and contamination
2. Night terrors
3. Separation Anxiety at bedtime Increases

Physical Symptoms

Continues as Above at 3/14

4/18/08 Psychological Issues

1. Fear of fungus and contamination
2. Night terrors
3. Separation Anxiety at bedtime Increases
4. Increased Aggression
5. Increased Night Terrors
6. Increased Hyperactivity

Physical Symptoms

1. Disorientation
2. Eye Dilation and Wild
3. Extremely Stuffy Nose (extreme allergies reported in town)

4/21/08 INCREASE AZITHRO to 250mg for 10 days

Physical Issues NONE

Psychological Issues

1. Mild fears
2. Mild Separation Anxiety
3. Hyperactivity, terrors, aggression – NONE

5/08 BEGIN AZITHRO to 125mg daily for 4 months

Psychological Issues

1. Mild Anxiety
2. Perfectionism
3. Grouchy "Edgy" but tolerable

5/15/08 STREP INFECTION AT PRESCHOOL 5/10-25/08

Psychological Issues – INCREASE IN ALL – but milder than Acute Onset

1. Anxiety
2. Perfectionism
3. Grouchy "Edgy" angrier
4. Sexual disinhibition
5. Finger sucking
6. Increased Hyperactivity
7. Ritualistic in readying for school

6/05/08 INCREASE AZITHRO to 250mg Daily

RESOLUTION IN ALL AREAS by JUNE 10th

6/10/08 DECREASE AZITHRO to 125mg Daily

To 6/17 Holding Steady

Mild Perfectionism remains.

6/24/08 and July 1/08 STREP INFECTIONS IN PRESCHOOL – NO INCREASE from 125mg.
I SUSPECT HE WILL GET WORSE BUT DO NOT INCREASE

7/4/08

Physical Symptoms

1. Eye dilation
2. Adventitious Movement – kicking, slamming hand on table, awkward body
3. Hyperactivity

Psychological Symptoms

1. Fear of contamination
2. Separation Anxiety at Bedtime
3. Increased anxieties over all
4. Increased Perfectionism

Our Son recognizes that THIS is PANDAS. Time to think about IVIG.

Back to Main Case Histories Page