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What is PANDAS?

PANDAS - Pediatric Autoimmune
Neuropsychiatric Disorder Associated with
Streptococcal infections.
PITAND - Pediatric Infection Triggered
Autoimmune Neuropsychiatric Disorders.

In these auto-immune conditions, a gene is
activated following an infection (usually Group A
beta-hemolytic Streptococcus or GABHS),
causing the immune system to respond
inappropriately.  

Antibodies attack the brain, causing Encephalitis
(inflammation of the brain), in the basal ganglia
region and cause a rapid onset of symptoms.

Once the autoimmune process is initiated, the
gene must be turned off to resolve the condition
and presenting symptoms.  

If caught very early in the process, antibiotics
may be sufficient and steroids/NSAIDS have
been used in some patients with some success
to decrease brain inflammation.  

In other cases, treatments such as plasma
exchange or
Intravenous Immune Globulin (IVIG)
therapy may be used to achieve remission.  
Is it only a reaction to Strep?
Many parents have found their children's
immune systems are so heightened that they
react to viruses or other bacteria. (PANS)  

Especially for these cases, IVIG or PEX
(plasma-exchange) is helpful in reducing the
autoimmune reaction.
Children with PANDAS often experience:

  • Rapid onset of Obsessions, Compulsions and/or Tics
 with one or more of the following:
  • ADHD symptoms (hyperactivity, inattention, fidgety)
  • Separation anxiety (Child is “clingy” and has difficulty separating from his/her
    caregivers.)
  • Sydenham’s Chorea and/or Choreiform (involuntary) movements
  • Mood changes (irritability, sadness, emotional liability)
  • Sleep disturbance (insomnia), separation anxiety at bedtime
  • Urinary urgency or frequency/enuresis
  • Marked deterioration in handwriting and/or math skills
  • Tactile/Sensory Defensiveness
  • Age Regressive Behaviors
Sept 23, 2011   ~  A New Chapter...  Finding our way to a PANDAS Diagnosis
Nov 25, 2011    ~ Got Camel Milk?    also see Nov 30, Update
Dec 29, 2011    ~ Kickin' it Old School  (replacing antibiotics with natural options)
Days 1-60         ~ Timeline of events for diagnosis and early treatment
                
Including communication with doctors and lab results
CAROLINE'S STORY: Regarding Caroline Blogs specific to PANDAS
Two interviews with Dr. Trifiletti about
PANDAS.  Very helpful segments for parents
considering a diagnosis.
Tip:  click the text PANDAS 1 and PANDAS 2 for links that work.
Nov 13, 2011    ~ The Staphysagria Duck  |  Homeopathy and PANDAS
More Answers. More Reasons. More Understanding...
And so it's up to us...
for every Parent.
Also
see:
The name is PANDAS and it CAN be treated.
                           Eight Questions
                                         
What would you do if...
Your typical child suddenly began sneezing or coughing multiple times a minute ALL DAY LONG...
and out of nowhere developed nearly constant uncontrollable, jerky movements of their limbs?
And their doctor insisted it was purely
psychosomatic.

What would you do if...
Your autistic child suddenly developed all new, extreme OBSESSIVE COMPULSIONS...
and was so fixated on ritualistic behaviors that any deviation resulted in complete meltdowns?
And their doctor insisted it was
just autism.

Would you trust your intuition?

Would you know to look for more?




Would you
STAND UP for your child?

Of course you would.  Just as thousands of parents with similarly affected children are doing every day.

Every one of them started off feeling alone.  Searching for answers without guidance.

UNTIL... They found groups of other parents.
                  
And doctors who understood.  
       They found answers and realized they weren't alone and it isn't rare.

What would you do then?  

Would you join forces to raise awareness?  
    Using
every ounce of determination to make sure no one else would feel alone?
                  
Would you make it your mission to ensure no other child lost valuable treatment time to
months or years of
misdiagnosis?
                                                                                                             Of course you would.

Awareness needs to start now.

There are answers, there is hope, but there is NOT awareness.  





The parents.  The ones who have found the answers.  The ones who are healing our children.  
    Let's talk about this very real disorder that's estimated to affect
more than 1% of our children
                          and more than 30% of children with Autism Spectrum Disorder.


Let's talk about treatment and the children who are in remission.

Let's give hopeless parents the hope they desperately need.
    Tell them how to heal their children believed to be suffering from a "mystery" illness.

Mystery no more.  The ocd and tics that seemingly came out of nowhere are not psychosomatic.

They
have a name...




What would you do if...
Your daughter cleared her throat 500 times a day?  
Had obsessive compulsions & tics so severe they prevented her from
                                                           meaningful
participation in life?
Mutilated her fingernails to the point of complete destruction?

Ours did.  And now
she's healed.  Here's her story:
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