Letter for School with Orchestra Analogy

The following primer for schools was created by K.Streb, a parent of a child with P.A.N.D.A.S. We know it is difficult to find an effective way to communicate the challenges our children are going through, so we hope this framework helps you.

Please also comment at the end of this post and tell us some of the strategies that have worked for you in communicating with your child’s school.

P.A.N.D.A.S. Pediatric Autoimmune Disease Associated with Streptococcus

Pamphlet for teachers and school administrators

P.A.N.D.A.S. is caused by a “normal” Strep Infection, the difference is the P.A.N.D.A.S. child’s antibodies do not react normally.  Instead of attacking the infection, the antibodies attack the basal ganglia in the brain.  The basal ganglia remain inflamed and cause numerous psychiatric symptoms as well as motor and vocal tics, and headaches.

Updated PANDAS signs and symptoms (taken from www.webpediatrics.com)

1. Pediatric onset. It is now believed that the first symptoms of PANDAS occur between 18 months and 8 years of age. If the first clinically recognized episode is detected after the age of 8 (and especially after the age of 10), it is unlikely true initial episode, but the recurrent one. Previous episode(s) were simply not recognized as such.

2. Particular patient phenotype. PANDAS patients are frequently highly intelligent, very communicative child who is also a very good student. It is common that patient’s past medical history contains information about occasional (“transient”) tic(s), certain degree of obsession with order, cleanness, preciseness, etc.

3. Presence and/or history of certain psychiatric symptoms.

• OCD symptoms (intrusive thoughts, anxiety, different phobias, unfounded fears) are present in virtually ALL cases.
• Sleep Disorder(s) (insomnia, inability to fall asleep, frightful sleep, nightmares) in some form is present in 84% of patients.
• Behavioral regression (separation anxiety, insistence to remain at or close to home, “baby-talk”, temper tantrums) in some form has been identified in 98% of patients.
• Aggressiveness (present in 62% of patients).
• Hyperactivity and inattentiveness (present 71% of patients).
• Learning disability particularly affecting mathematics’ skills (present in 62% of patients).
• Inability to concentrate (present in 87% of patients).
• Hallucinations (9% of patients).
• Eating disorders (17% of patients) are among other less frequently present psychiatric symptoms of PANDAS.

4. Presence and/or history of certain characteristic physical signs and symptoms.

• Adventitious movements have been identified in 31% of patients.
• Wide pupils (patient appears “terror stricken”; present 83% of patients).
• Various and evolving tics (present in 72% of patients).
• Deterioration in fine motor skills and handwriting (89% of patients).
• Short-memory loss (62% of patients).
• Enuresis and/or urinary frequency (88% of patients).
• Increased sensory responses (Increased sensitivity to light, and/or sound, and/or touch and/or smell – 39% of patients)

5. Characteristic clinical presentation.

• Sudden (sometimes overnight) onset of symptoms. Parents frequently recall the exact date and/or time of the day when symptoms appeared.
• Wax-and-wane pattern of symptoms. Symptoms exacerbation is frequently associated with or may occur following an infectious event, sometimes even to a live virus vaccine administration.
• The initial episode is usually associated with Group A Strep (GABHS infection); however subsequent episodes do not necessarily have to be related to GABHS.

6.  Significant elevation of GABS antibody titers (i.e., ASO titer, AntiDNase B titer) is common, but not necessarily present in every case. Negative GABS titers do not absolutely exclude the diagnosis of PANDAS.

7. Measurable clinical improvement following the “Steroid Burst” treatment.

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The Orchestra Analogy

In an orchestra there are many different instruments playing different parts.  The Conductor keeps everyone cooperating and playing together.  If the conductor left then all the instruments would start competing with each other and we couldn’t hear the real music.

You have many thoughts in your head right now:

• The class needs to turn in their homework.
• You have to stop at the store on the way home.
• You have to make 50 copies but first you must meet with a parent.
• Family is coming to visit this weekend.

Your “Conductor” works just fine and you manage each of these thoughts without them affecting the other parts of your day.  You can keep them in the back ground until you need them.

In a child with P.A.N.D.A.S. the conductor has disappeared.  Every time a new thought or activity comes into his or her head the other ones just stop.

Example:

You tell her to sit down and do her math. The child next to her asks her to borrow an eraser, she happily complies. Another child shows her something just for a second.  She completely forgets that you told her to do her math and starts a completely different project.

Twenty minutes later you ask for her math and she says, “Oh I forgot!” and she starts to work on it again, disappointed in herself and feeling bad that she didn’t get it right.

Treatment for P.A.N.D.A.S. is still investigational, not covered by insurance, and most doctors know nothing about it.  Therefore, there is a lot of trial and error to help these children heal. Recovery can take many months.

Insert personal information paragraph here on your P.A.N.D.A.S. child’s symptoms and things the teacher should look for or know about them.

Please be patient with ________, she (or he) really is trying her (or his) best.

With warmest regards,

______________