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Transcript
Dear ____________,
Please allow me to take a moment of your time to explain and to send some
information to you about the auto-immune disorder (child's name) has. This
disorder is called P.A.N.S. (Pediatric Auto-immune Neurological Syndrome)
When a child has P.A.N.S. there is an auto-immune reaction that occurs as a
result of an infection or virus. These children have a weakened and impaired
immune system that is unable to fight off strep or other auto immune illnesses
including Coxsackie, Lyme, Mono, Mycoplasma, the Flu virus and others with a
traditional course of antibiotics. Through a complex mechanism, their body ends
up producing antibodies that cross the blood brain barrier and mistakenly attack
the child's own brain, rather than the intended bacteria producing an
autoimmune reaction in the basal ganglia area and triggering the movement
disorder/sudden onset of OCD. The reaction/symptoms vary from child to child
but may cause vocal/motor tics, symptoms that resemble OCD, ODD, ADHD,
changes in handwriting/drawing and math skills, anxiety, depression and more.
Even once an infection is cleared it may take a while for symptoms to subside.
Unfortunately occasional flare ups are common, and may cause tardiness,
absences and missing home works. I ask that you help him stay focused by giving
him reminders, sitting him up front, and ensuring that all notices, textbooks and
homework materials are in his backpack at the end of each day. Currently we are
working diligently on getting (child's name) symptom free. (child's name) still
exhibits occasional involuntary motor and vocal tics that you may notice. The
vocal tics seem to change and evolve into new ones with each new immune
trigger.
I humbly ask that if one of his classmates or yourself is diagnosed with Strep or
any other virus or infection that is known to be contagious (airborne) to the
extent possible, that you please let us know so that we can take precautions to
avoid a serious flare that may result in long term home bound instruction. If at all
possible, I would appreciate it if you could move his seat if you know a child
sitting in close proximity to (child's name) is showing signs of illness or seems to
be ill often. It's preferable if (child's name) seat were in the front of the room.
(child's name) 504 plan requires that the surfaces and equipment in the
classroom that he comes into contact with daily are disinfected. If necessary. I
can provide you with antibacterial wipes for this purpose. Also reminders to
(child's name) to wash his hands frequently and after each trip to the restroom
(especially during the winter months and strep/flu season) would help
tremendously.
If you notice any new tics or behaviors please don't hesitate to let me know. It is
best to err on the side of caution and allow us to determine if we need to see his
doctor. Also, if you witness any improvements, I would love to hear about those
too. (child's name) is like any other child, he just happens to have an
autoimmune disorder that may affect his movement/behavior. P.A.N.S is not
contagious. He functions as any other (insert child's age) year old. There are no
limitations to what he can do. I simply ask that you be a part of our team to help
us keep him as healthy as possible for the remainder of the school year to keep
this disorder in check. (child's name) gets overwhelmed from his physical and
neurological symptoms and may frequently ask to use the bathroom or visit the
nurse, he may legitimately feel ill, or he may even make up an excuse to remove
himself to simply escape the environment. I feel that it would be beneficial to
establish a “code” with (child's name). Perhaps if he puts a certain object on his
desk or your desk, it will signal you that he is overwhelmed and needs a short
break from the class room. ADHD-like symptoms can make him fidget and
unable to focus to do his work. Making many trips to the bathroom/nurse is not
his way to get out of work, it could be an overwhelming urge to escape to a safe
place where he can gain control of his symptoms and "release" as he tends to hold
his tics in around people he does not feel comfortable around.
As time goes on and you become more familiar with his symptoms you will be
better able to watch for physical symptoms that his anxiety is increasing so you
will be able to catch it early and address it before it disrupts the class. Proactive
measures to keep him feeling safe can go a long way in helping him self-regulate.
Patience is the best gift you can give him. It allows him to work willfully and at
his own pace. Rushing and multitasking inhibit his cognition and frustrates him,
which makes him become disengaged and overwhelmed. Although it's not always
possible, (child's name) works best on his own, one step at a time and at his own
pace. He is best motivated through encouragement, so please encourage all his
efforts and good deeds.
(Below are a few informative excerpts from a PANDAS/PANS blog
http://pandassucks.com/ that explains this illness better than I ever could:)
PANDAS/PANS is a MEDICAL condition that presents with mental illness/behavioral
symptoms. "The children have BRAIN INFLAMMATION and cannot control themselves.
Strep is the most common infectious trigger in PANDAS, but other bacteria (like walking
pneumonia/mycoplasma pneumonia or Lyme), viruses, environmental or metabolic
conditions can bring symptoms or set off the condition itself, as in PANS. The main
symptom is OCD, and there may also be Tics, with Anxiety, Mood Lability, ADHD, Sleep
Disturbances and other issues. PANS is a MEDICAL condition. The child does not
actually have OCD, Tourette’s, ADHD, Anxiety, or Oppositional Defiance Disorder
(ODD), etc…. These children have PANDAS/PANS, which causes BRAIN
INFLAMMATION and the symptoms are a result of issues in the Basal Ganglia, the
conductor of the body. A child’s mathematical ability, handwriting, and other academic
functions may also be affected. The exact cause of PANDAS is unknown at this time. It is
likely a combination of effects. Boys seem to be affected more than girls with an average
onset age of 6.5 – 7.4 (+/- 3 years). Some PANDAS/PANS kids may recover at puberty,
but for some, that is when the condition strikes. There may be some correlation between
PANDAS/PANS and Autoimmune Encephalitis, and as that theory is strengthened, the
MEDICAL side of the condition may become a bit easier to explain. PANDAS/PANS can
have an encephalitic-like sudden onset at times. Encephalitis is inflammation IN the
brain from a bacteria, virus, or autoimmune reaction that can be easily detected on an
MRI. PANDAS is inflammation from autoimmune reaction to a specific area of the brain
(Basal Ganglia) that cannot easily be seen on an MRI. There is a precedent of
neuropsychiatric symptoms caused by encephalitis, and there is some overlap of the
conditions. Some Researchers/Specialists are looking harder at the connection between
PANDAS and its Encephalitic nature."
Our children are sick, even if they do not always look sick. PANDAS/PANS is Medical
not Behavioral. "Just as you wouldn’t punish an epileptic child for having a seizure. You
wouldn’t punish a diabetic child for needing insulin. You wouldn’t punish a child with a
broken leg for not being able to run in gym class. You wouldn’t punish a child with a
severe peanut or other food allergy for going into anaphylaxis. You wouldn’t punish a
child suffering from a concussion for any confusion or loss of skills. PANDAS/PANS
children do not deserve to be punished for their symptoms. Yes, the behaviors need to be
controlled, corrected, and addressed at school… but there also needs to be a lot of
patience and understanding. Yes, PANDAS/PANS symptoms are confusing. Yes, they’re
sometimes disruptive to the classroom. And yes, sometimes the child seems fine and then
“loses it” for no apparent reason. But it is a child’s BRAIN INFLAMMATION that
causes these symptoms. All of this is a result of their immune system being triggered and
creating an autoimmune reaction. In other words, their body attacks their own brain
because they came in contact with germs. But I will also say, that sometimes kids are just
going to screw up. ALL kids… including PANDAS/PANS children. We cannot expect
them to be perfect. Nope. So while it might not always be PANDAS/PANS symptoms
causing issues every time at school, it is difficult to tell what’s what and avoid being
negative or critical. As parents we struggle at times to determine whether it’s PANS,
brattiness, giftedness, or 100% age appropriate behavior. Overtime you will develop a
pretty good PANS symptom radar. Learning opportunities are always going to happen
with the other types of behaviors. But there is always so much guilt when we realize they
were punished for behaviors over which they had little to no control."
PANDAS/PANS symptoms can manifest when the immune system is triggered. "This
means that the child might not “get sick” but still have PANDAS/PANS symptoms. Or
they may be asymptomatic to illnesses and only present with mental illness/behavioral
symptoms to signal an infection. Exposure to an illness or allergen can have an effect.
There may not always be an infection or virus present in the child, but usually there will
be. This is why a child may be fine in the morning and “lose it” in the afternoon. Even a
loose tooth or dental work can trigger an immune response and may induce
PANDAS/PANS symptoms. This “triggered immune system” concept can be tricky to
understand because symptoms may wax and wane, so sometimes a child is okay until they
are definitely NOT okay."
Tics are another main symptom of PANDAS/PANS. "Tics may be either motor or vocal
in nature. Verbal tics may make it difficult for a child to “be quiet” in the classroom and
may be seen as an attention-seeking behavior. Motor tics will vary considerably with
effects seen in schoolwork accordingly. (For example, a head jerking tic could affect any
reading assignments.) Some children may find that their tics increase at school when they
are under time pressures (tests), have anxiety/stress, if they are tired, or if they are in a
stimulating environment. Tics may decrease when the child is distracted, in a new
environment, or when a child is fully engrossed in an activity. Teachers, school
personnel, and other students must realize that the tic is not something the child can
control."
Below is a list of some common PANDAS/PANS Symptoms: NOTE: I put one
asterisk (*) next to symptoms we have observed in the past, and two (**) next to
symptoms we are observing at the present time)

BEHAVIORAL Symptoms
Anxiety**

Separation Anxiety

Obsessive Compulsive Disorder*

Sensory Issues*

Poor Impulse Control*

Attention Deficit Hyperactive Disorder/ADHD**

Obsessive Thinking/Inappropriate Thoughts*

Tantrums

Defiance**

Eating Issues (Limited Menu/Fear of Choking/Anorexia

Personality Changes*

Perfectionism*

Rages

School Refusal*

Fight or Flight Response

Age Regression/Immaturity

Rigid Thinking*

PHYSICAL Symptoms
Motor Tics/Vocal Tics**

Eyes: Dilated Pupils*, Vision Issues, Hallucinations

Eating Issues (Limited Menu/Fear of Choking/Anorexia)

Weight Loss/Weight Gain

Frequent Urination (Trips to the Bathroom)*

Unusual Gait

Balance Issues

Chapped Hands or Lips/Mouth

Trichotillomania (Hair Pulling…Skin Picking)

Enuresis*

ACADEMIC Symptoms
May Lose Math Skills or Have Difficulty with Math*

Possible Decline in Handwriting Skills (Dysgraphia)*

May Resist Writing Assignments**

Seemingly Unable to Make Simple Decisions*

Poor Short-Term Memory Can Affect Test Scores**

Child’s Artwork and Other Creative Work May Decline with Illness*

Avoidance of High Sensory Environments (Art, Music, Cafeteria, Physical Ed,
etc…)

Inability to Focus on Single Task at Hand**

May Refuse to Do the Work**

Perfectionism (Erasing through the paper, needing to start over and over, etc…)**

Refuses to do school work or homework – reading, writing, math.**

EXECUTIVE FUNCTION Symptoms
Difficulty with Working Memory and Holding Information**

Poor Organizational Skills**

Messy Workspace/Desk/Locker (Note: Could Also Be VERY Neat)*

Time Management Issues**

Difficulty Planning/Prioritizing Attention on a Single Task**

Difficulty Making Decisions**
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 30 copies for tomorrows lessons.

You have to return a parents phone call.

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.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 him to sit down and do his math. The child next to
him asks to borrow an eraser, he happily complies. Another child shows him
something just for a second. He completely forgets that you told him to do his
math and starts a completely different project. Twenty minutes later you ask for
his math sheet and he says, “Oh I forgot!” and he starts to work on it again,
disappointed in himself and feeling bad that he didn’t get it right.
An informative website on medical studies and case histories on PANS that may
better help you and the school staff better understand more about this disorder is
www.pandasnetwork.org. A great (short) educational video about
PANDAS/PANS: http://pandasnetwork.org/moleculera-labs-launches-educationalvideo/ Treatment for P.A.N.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. Please be patient with (child's name) , he really is
trying his best. Sincerely, (Parent/Guardian Name) Do not hesitate to contact us.
Email: __________ Home: __________ Cell: __________