My son Grayson suffers from a severe Auto immune disorder known as PANDAS(Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) he also has autism and is nonverbal with Global developmental delays PICA and cerebral folate deficiency Unfortunately insurance doesn’t cover most of his medical care and I’m forced to pay out of pocket for it I recently became a single mom of three I am unable to work throughout the week because of Grayson‘s high level of need of care he cannot go to daycare so that requires me to only work the weekends, especially since there is no respite care available for him He has no sense of danger and tries to eat lots of things that are not food. He barely sleeps at night and also has seizures. He requires lots of daily care from specialty diet to medication’s and weekly therapies he attends I am trying to raise funds to help with his medical care that is vital on his road to recovery and remission from this awful autoimmune disorder
there are currently only four doctors in all of Missouri that actually diagnose and treat and unfortunately Missouri is not one of the states that mandates through legislation that insurance paid for treatment
I have to pay out-of-pocket for Grayson to go to a functional medicine doctor. If I had not done that from the beginning, we would not even have a diagnosis for him currently it’s only been through me fighting hard and advocating for him that he is starting to get the treatment that he desperately needs
when Grayson gets sick he will Mount no immune response usually and only start having severe behavioral issues, very severe aggression, severe separation anxiety, OCD self in behaviors, seizures severe food avoidance, and will barely sleep,
I know times are hard for everyone right now. It is difficult even in our economy these days for a single parent let alone one with each child with special needs and I only have Grayson, but I also have a daughter named Violet that also has autism ADHD and PANS(Pediatric Acute-Onset Neuropsychiatric Syndrome)which has the same symptoms as PANDAS with just different triggers depending on the child .Violet goes through similar issues as Grayson and requires similar medical care like Grayson most of which is also not covered by insurance
Grayson was starting to speak and because of a flare from PANDAS regressed and stopped speaking Violet had a regression with urinary continence as well as being able to read and do basic math skills due to a flare
our family is very appreciative of any help anyone can offer
I unfortunately do not have a lot of family and none of them live close it really takes a village and we have none
