Kloey's fight against PANDAS

      PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus) and it's associated PITAND (Pediatric Infection Triggered Autoimmune Disorder), are medical disorders that are becoming more and more prevalent througout the state and country.  Many researchers, including the National Institutes of Health and the International OCD Foundation believe that PANDAS/PITAND/PANS occurs in some children when antibodies produced to fight an infection mistakenly attack the brain and trigger a sudden onset of behavioral disorders,such as Obsessive COmpulsive Disorder (OCD) and Tourette Syndrome.  Worldwide, families are finding that seemingly normal kids can change almost overnight after being exposed to common childhood illnesses. 

        Kloey was exposed to strep in October of 2013; she was 5 years old.  It started with coming home from school and stripping her clothes off the minute she walked in the door because the clothing was bothering her.  She started telling us she didn't want to play with anyone on the playground at school and was becoming socially withdrawn quickly. Within this time she started having seperation anxiety, refusing to attend school and once at school was screaming not to be left there as if she was in harms way.  She was having tantrums, meltdowns, and telling everyone she wanted to be left alone and not be touched.  There were times when she wouldn't eat her food if anyone was in the room with her or looking at her. She developed OCD with clothing and the items around the house.  She had mass meltdowns over creases and lines on blankets and her clothing, at 5 years old!   She developed sudden onset of aggression and rage along with sleeping in our bed again due to fear and insomnia.  She has also developed a Tic of nasal clearing and oppositonal behavior.

     Kloey missed 75 days of her Kindergarten school year due to PANDAS.  Instead of spending time with friends, we spend time traveling to Chicago or out of state to doctor appointments.  PANDAS is not covered by any insurance company in the United States.  One doctor appt. costs us between $300-475.00.  About 90% of treatment plans are also not covered for us.  We have currently decided to Homeschool Kloey while we work through some of her PANDAS symptoms.  Some symtpoms simmer down for awhile until she is exposed to Strep again.  Even minimal exposure can bring out Kloey's PANDAS symptoms and cause a flare lasting from a few weeks to months.  Kloey is an active Girl Scout and takes part in a local Home-School Co-op for regular socialization with peers.  We also have a great group of friends of with whom Kloey prefers to socialize with on her comfort level.

   PANDAS has changed our lives.  Before any of this happened we had no clue it existed.  Our hope is to spread awareness to other families and to preach that you as a parent are your child's advocate.  Don't give up hope and keep fighting regardless of what you are fighting.  "We will rise above this" as Kloey's Nana says.

  Kloey would like to say "I wish I never had PANDAS, because I have to go to alot of doctor appointments and I don't feel good."

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Organizer

Jaclyn Trujillo 
Organizer
Walnut, IL
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