PANDAS Awareness Day 2013

Today is PANDAS Awareness Day...my friend Lauren, another mom I have met through one of my support groups, was able to get the Texas Legislature to recognize October 9th as PANDAS awareness day.

SO what does it mean?

 

 

Today marks a day to recognize that the disorder that my son suffers from truly exists.  It is a day to make other parents aware of the drastic changes that can occur from a strep infection gone bad.  It is a day to celebrate the gains we have made in finding treatment methodologies that have worked for us and the progress we have made in intensive therapy over the past year.

 

Today also marks a day that raises awareness of an illness that changed my son.  After contracting a strep infection at 17 months of age, he reacted to the antibiotic that was prescribed and was given Prednisone to combat the rash that had developed over his entire body.  The day after the steroid was complete was the day that would change our lives forever.  He woke up that next morning with an eye blinking tic.  I remember Peter and I sitting him on top of our countertops, watching him intently and videotaping his blinking.  Working with children with special needs, I had background medical knowledge and thought he may be having seizures, as these blinks were followed by blank stares.  We were assured by doctors that this "viral tic" would go away and he would be just fine.  Two weeks later, he started to walk on his toes.  Soon after that, he began to cover his ears for loud noises.  A couple of months later, he started to flap his arms and kick his legs in excitement.  Over and over again, due to his social skills and his incredible language, we were told he was "fine."

 

Mommy instinct took over when issues seemed to continue to develop.  Tantrums became more intense than the typical "terrible twos."  I had only raised a little girl prior to having Hunter, so I didn't know how much of this was just him being a boy.  Anxiety and Obsessive Compulsive Disorder traits surfaced and I knew in my heart that this was not the same boy that we saw a few months prior.  As we continued to question and have google sessions late into the night, a hypothesis became a reality.  Did that strep infection do this to him?

 

PANDAS is Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep.  The proposed link between infection and these disorders is that an initial autoimmune reaction to a GABHS infection produces antibodies that continues to interfere with basal ganglia function, causing symptom exacerbations.  Unfortunately, antibodies are being produced in his little body.  With several autoimmune reactions that have taken place, my son’s red blood cells are confused- they have been attacking healthy tissue and leaving Hunter with an unfortunate medical, as well as psychological, disorder.  Due to the unfortunate timing of this reaction, my son now also has to battle an Autism Spectrum Disorder as well.

 

 

If I can save one family from going through the trials that our family has endured over the past three years, it would make this awareness day worth it by a million. Trusting your gut and knowing your child are often times more credible than visits and procedures. 

 

Awareness day means that we are making  progress.  We are educating other parents out there that this disorder does in fact exist- we are living proof of an Autoimmune cascade.  We often have family and friends ask what they can do for us. 

 

Number one: PRAY for us. God has shown his face countless times throughout our journey.  Peter and I have tried to make our relationship the rock- but we could never do it alone.  God has been by our side.

 

Number two:  Donate blood.  One day we will be blessed with the ability to provide Hunter with IVIG and give him a chance at (medical) recovery.

 

Number three:  Spread the word.  Awareness=Acceptance=Earlier Treatment

 

And number four:  Be kind and non-judgmental to others.  Since starting this journey, I have been unbelievably blessed with a support network of friends, moms, family and even strangers who can tell it has been one hell of a day.  I don't ever pass a judging glance on the screaming child at the grocery store.   I never make assumptions about parenting skills.  And I will never doubt a mother who tells me, "Something changed on this day."  Mothers (and fathers!) just know.

 

Thank you from the bottom of my heart for all of you who have supported us, followed our story, and have been there in so many different ways.  Your presence is our lives is the biggest blessing of this journey.