Passing the time with pictures and follow ups

I have been patiently waiting.  The infusion center called me on Friday and Abigail, who has become like a friend (she doesn't even answer with her name anymore- she recognizes my number and answers, "Hey Erika!"), called me for an update.  I didn't have anything to report, so she said she would call Dr. G's nurse and find out if there was any new information for scheduling. 

I did write an appeal letter to our insurance company, and sent it off today.  They get 30 days to respond.

Dear Sir or Madam:

I am writing to express my son’s intense need for IVIG medication and treatment. This procedure is medically necessary to bring about dramatic improvements in his condition.  I have included history and documentation, to supplement the information you already have in his file, which will demonstrate the importance of my son undergoing this procedure. I hope that you will take adequate time to review our case and approve a treatment that could be life-changing.

HISTORY

In November 2009, at the age of 17 months, Hunter contracted an infection, with a 104 fever, while out of state and was taken to urgent care where he was prescribed azithromycin and had a full body reaction.  After given a five day treatment of steroids to combat the allergic reaction, Hunter started an eye blinking tic.  Two weeks later, he started walking on his toes, and other issues began to develop (detesting loud noises, arm flapping, decreased fine motor skills).  His language never regressed.  An EEG was completed to rule out seizures, which yielded normal results.  Over the next year, he became socially withdrawn and his tantrums and irritability increased.  In December of 2011, he was diagnosed with Pervasive Developmental Disorder.  We knew that even though he had behaviors to support this diagnosis, there was an underlying medical reason for the shift in our child; PDD-NOS is a behavioral diagnosis, not a medical diagnosis.  If a patient exhibits traits and characteristics of behaviors consistent with the diagnostic criteria for Autism, then a diagnosis can be made.  However, several of the characteristics that my son exhibited would cross-over to the symptoms significant in an autoimmune response like he had, especially since it occurred at a critical period of development (17 months). 

 An MRI (completed 10/12/12) and an EEG (completed 10/18/12) both indicated normal results.  Blood work has shown highly elevated strep titers (Anti-D Nase B Strep Antibodies), CoxsackieA IgG, Mycoplasma, and HHV6, even without recent exposure.  Hunter was also diagnosed with Vitiligo by Dr XXX, a Pediatric Dermatologist in XXX.  This autoimmune disorder developed post-initial infection, with a patch on his hip.  The Vitiligo now has spread to several areas on his face and body.  He has also been unable to tolerate gluten and wheat, another autoimmune reaction that has started since the initial illness.

 Hunter started in-home ABA therapy in the fall of 2012, with up to 20 hours per week.  In addition, he began the Intensive Outpatient Program at XXX for six hours per week.  He contracted strep in February and an immense regression occurred, where symptoms resurfaced that had previously been extinguished.  Behavioral data supports this regression and their inability to stabilize his behavior, even three months post infection.

Dr. XXX Pediatric Neuroimmunologist, at  XXX recommended a steroid burst in June of 2013 to determine if a temporary cessation of the production of antibodies would decrease inflammation and accompanying behaviors.  Administration of Solu-Medral (500mg) for five subsequent days yielded positive results.  Aggression, irritability, oppositional defiant-type behaviors, acute separation anxiety, sensory sensitivity to noises and touch, anxiety, OCD, behavioral regression, and deterioration in handwriting all decreased, with blind data to support these changes. Our ABA therapists were in the dark to the timing and nature of the steroids; when data was presented after two months post-steroid, it was clear and indicative of an immunodeficiency.  The steroids reduced inflammation and temporarily stopped the production of antibodies.  

IVIG, a medication derived from normal antibodies, would neutralize the harmful antibodies and restore normal immune function.  My son would once again have healthy blood cells.  With several autoimmune reactions that have taken place, my son’s red blood cells are confused- they have been attacking healthy tissue and leaving my son with an unfortunate medical, as well as psychological, disorder.  My son will not continue to make significant progress until we fight the medical component that is encompassing his five-year-old body.  His immune system needs to be interrupted and rebooted to stop the antibody production.

I am asking you to review my son Hunter’s case with diligence, and understand the complete picture.  He was neurotypical until 17 months of age; we are hoping to again see the son we once knew.  The daily struggles he endures should not be a part of everyday life for a child.  IVIG is his chance at recovery.

Please do not hesitate to call me with further questions, data review, or any other aspect that I can be of assistance for understanding my son’s complex case.   I appreciate your time and consideration

 

Hoping a parent, heart-felt letter might change their minds, but I am also cognisant of the fact that it most likely won't. :(

Here are a few pictures from some of the fun we have had lately...

Fun snack for Hunter's class at school, idea by Grandma Sue

Our favorite weekend playtime- "vacation"

Morning stories in mommy and daddy's bed

Sweet neighbors!

group hug!

 Paige was chosen as student of the month!  The quality was Patriotism, and the class voted...she was chosen based on her honor to the flag and the country, and being a good friend.  Couldn't be more proud.

 

 Peyton and I drove to pay our water bill, and I pulled over and parked when we saw this big fire ladder up in the sky.  He LOVED watching them!

 We went to see an immunologist we saw at the beginning of our journey, Dr. R.  This is his office waiting room...can you spot Hunter in the swing?

 Dr. R thought that the PANDAS diagnosis was accurate (he hasn't seen him in a year and a half).  He questioned some of the recommendations made by Dr G and reviewed all his labs, tests, and procedures.  He recommended a short-course antibiotics to take care of the risen mycoplasma levels.  However, Hunter has an allergy to the top antibiotic, and the second (Biaxin) is in the same class as another allergy of his (azithromycin).  So he recommended Omnicef...haven't picked it up yet.

Peyton shopping at the grocery store


Spent another fun time at the waterpark with friends!