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As much of our friends and family support structure knows, Meg has been struggling with PANDAS/PANS for a decade now (and her sister Mary-Kate now for 3years). PANDAS - Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep (immune system attacks brain during strep infection) PANS - Pediatric Acute-onset Neuropsychiatric Syndrome (immune system attacks brain during any infection, illness or exposure).
This August Meg got a virus that has thrown us into a more severe form of basal ganglia encephalitis. In the last 4 months she has been in the ER 7 times and admitted once. As of now, the treatment she is undergoing involves antibiotics, steroids, many supplements, medications and for two months, an IVIG treatment which is a two day process and costs $15,000 per treatment. Because PANDAS/PANS is so misunderstood in the medical community, most treatments are not covered by traditional health insurance. We are trying with everything in us to work through the many insurance denials and appeals, but have been turned down more than we have been successful. An inflamed brain cannot wait for red tape or months of insurance approvals so we have had to pay out of pocket for just about every part of her treatment to date. Many kids in this state are misdiagnosed and are involuntarily placed in psych wards for weeks/months, during which time brain damage is slowly being done. We are not willing to let that happen to Meg!
Many of you have asked “how can we help?” and many of you have mentioned that we should do a gofundme. It's not an easy thing to reach out, it's humbling, but right now this is what we need. Any support toward medical costs will be so helpful! MANY of you have already reached out with prayer, generous donations, housing, meals, cleaning and helping over and over in emergency situations! It takes a village and we are so grateful for ours♥️
This August Meg got a virus that has thrown us into a more severe form of basal ganglia encephalitis. In the last 4 months she has been in the ER 7 times and admitted once. As of now, the treatment she is undergoing involves antibiotics, steroids, many supplements, medications and for two months, an IVIG treatment which is a two day process and costs $15,000 per treatment. Because PANDAS/PANS is so misunderstood in the medical community, most treatments are not covered by traditional health insurance. We are trying with everything in us to work through the many insurance denials and appeals, but have been turned down more than we have been successful. An inflamed brain cannot wait for red tape or months of insurance approvals so we have had to pay out of pocket for just about every part of her treatment to date. Many kids in this state are misdiagnosed and are involuntarily placed in psych wards for weeks/months, during which time brain damage is slowly being done. We are not willing to let that happen to Meg!
Many of you have asked “how can we help?” and many of you have mentioned that we should do a gofundme. It's not an easy thing to reach out, it's humbling, but right now this is what we need. Any support toward medical costs will be so helpful! MANY of you have already reached out with prayer, generous donations, housing, meals, cleaning and helping over and over in emergency situations! It takes a village and we are so grateful for ours♥️
Organizer
Dana Burgess
Organizer
Richmond Hill, GA