Sunday, November 10, 2013

Pandas: Our life since IVIG.

PANDAS.  Our life since IVIG...

Mid June of this year, our son had his first IVIG treatment.  If you have followed this forum, you would have read just how beautiful he did.  His motoric movements non-existent within in days of treatment.  His temperament,  unstable, volatile , and hyper... overnight, changed back to the child I knew.  Gone were his tantrums, angry outbursts, and  unreasonable attitudes.  His need to use an entire roll of toilet paper in one sitting went away.  I did not hear him speak of fears that I, his mom, was going to be hurt because I stood on a chair, or rode a bike, etc.    I saw a child grow up instantly.  The milestones we all wait for with typical children seemed to appear overnight.  I saw a child who was acting like a 7 year old, and not a 3 year old from an emotional standpoint. He was now calm.  Self awareness and an active awareness of social norms  started to show itself.   My child, my sweetheart, was smiling again.  He was meeting the potentials that I knew were deep inside of him.

This lasted for 12 weeks.

In school, Everett was exposed to Strep and the Stomach Flu.

Three days later, on a dime, my child reverted back. Another episode. We tested for strep and it was negative.  He ran a slight fever, but that was all.  It appeared that he was reacting to exposure.  The next three weeks were horrible.  All past symptoms reappeared along with a level of anger/oppositional behavior that I had not seen before. School was almost impossible. What got him through were the group of teachers, school psychologist, and principal who came to together in support of my child.  They were amazing. 

Our pediatrician, who diagnosed him with Pandas, agreed that perhaps it was time to test further.  Make sure that we did not miss anything. So in one day, my child underwent an EEG, MRI, and a Lumbar Puncture along with blood work.

He was discharged by the neurologist who did not believe in Pandas, and said that his blood work did not indicate any autoimmune issues, (Pandas is considered to be an autoimmune disorder).  He said, "If your son had an autoimmune disorder, we would have found it. While we have weeks to wait for the Lumbar Puncture results I do not believe that we will find anything." 

4 weeks later, the results came in.  My son has an autoimmune disorder.  Two well defined O Bands in his spinal fluid indicate that. 

In my humble opinion, it was this autoimmune disorder that created the perfect circumstance for Pandas to set in and take hold.

We now have insurance coverage for future IVIG treatments, and in fact, it looks like our Insurance carrier is  going to reimburse us for the one he had which we incurred almost 9K out of pocket expenses.

I am happy about the money, but I am more thrilled that we were finally able to find something to support his diagnosis.  Pandas is such a nebulous diagnosis.  It has yet to be truly embraced or fully understood by the medical community.  Parents who have children struggling with this disorder are often met by misunderstood, unsupported, smug disdain when turning to others for help. Parents  experience this from doctors, teachers, friends and family members.  To put it bluntly, it is awful. We have been blessed.  Our Pediatrician was the first to connect the dots.  We are lucky to live 20 minutes away from one of the few specialists, Dr. K.  My child's school was wise enough to know that this child, was "suddenly not himself".  I applaud them for their open hearts and minds.

This was all good, but our battle is not over just yet.

This was a tough episode. An unexpected one.  However it happened.  We were able to move him through it with antibiotics, but I am concerned.  It took only exposure to trip it off. 

Studies show that if Pandas is caught early, and an IVIG is done within the first year of first episode, 80% of children recover fully from this disorder with no future episodes. My son's was done about 1 1/2 years after his  first episode with 3 concurrent episodes before IVIG.  Another one is in his future probably.  I am grateful that we will have coverage. 

I share our journey to help others.  If you suspect Pandas, I would recommend following through with your instincts immediately.  If your child ever contracts Strep, don't assume that the antibiotics cleared it up.  Have your child retested to make sure.  By doing so, you can decrease the likelihood of Pandas ever happening.


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