Parker’s Fight Against PANDAS

Here we are almost a year and a half into knowing about a disorder called PANDAS; Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. Our oldest son Parker (age 12) our “lead dog”....our emotionally steady child who leads each of his siblings to be better and do better was suddenly stripped away after 14 bouts of relentless strep throat. Parker started with vocal tics...developed mood swings...that quickly deteriorated to seizure type activity, suicidal ideation and loss of gross and fine motor functioning. He truly fell into a category of autoimmune encephalitis. We have as parents valiantly battled this disease with everything we have got. Time, money, knowledge, research, sweat and tears (too many of these). We have given our all to help our precious boy. Parker is a hero in his own right. He has had over 15 infusions of IVIG and/or steroids. He’s taken countless medications. He lost his ability to speak for four long months. He’s had EEGs, MRIs, Lumbar punctures, Occupational therapy, speech therapy, functional medicine, chiropractic treatments, hospitalizations, 200 tubes of blood and literally hundreds of doctor appointments of some kind. We are at a place where even with help at the beginning of our journey we are faced with a another large obstacle....Parker still needs more. He’s still undertreated. These additional treatments are requiring more travel, time for us as parents to step away from our fiscal income generators, and another fight with our insurance company. We are looking at a two week hospitalization for plasmapheresis. To follow plasmapheresis, he will need several doses of Rituxan infusions that will cost around $33,000 each. He’ll likely need 3-4 dosings. Rituxan is not covered under our current policy. We plan to fight it and appeal but never really know how that will turn out. We’ve done everything we can. We’ve gotten second opinions, third opinions and traveled the country to help get our son the right care. We stand between providing that care and literally the money it will take to do it. Taking on these mountains has humbled us to the core to have to ask for help......yet here we are. Can you help? Thoughts and prayers are always helpful and if that is what you have, we are grateful to receive them. To help bring awareness to the plight of kids like Parker we agreed to be part of a news piece on ABC‘s 20/20 and Nightline. We felt that this was an important opportunity to gain the awareness that all of these kids need. These are kids that have been neglected and abandoned by the larger medical community. It was not just about our story but about this community of desperate parents and suffering children. Thank you to the thousands that we know who lift Parker in prayer each day. Thank you for your concern and educating yourself about PANDAS and PANS so you can be an insight into another child’s journey. Finally, thank you for your kindness and generosity.
  • Morgan Scott 
    • $40 
    • 4 mos
  • Kimberly Schloss 
    • $25 
    • 5 mos
  • Anonymous 
    • $25 
    • 27 mos
  • Diane Friederichs  
    • $25 
    • 31 mos
  • Chris Arisian 
    • $75 
    • 31 mos
See all

Organizer

Brian Barnes 
Organizer
Prior Lake, MN
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