An Urgent Call for Integrative Neuroimmune Clinics

I have a son with these symptoms. Our lives have been a living nightmare. Health care is failing these kids.

My son has suffered from PANDAS for 9 years. It has stolen his childhood. Blue cross blue shield of Alabama does not cover the medical testing or treatments necessary. We have to use a specialized doctor 6 hours away who doesn't take insurance. The medical establishment has failed our son.

Absolutely agree that these medical issues need attention, funding, and care accessible to all children and adults with these problems! Please support!

Please help our children. We need more research and treatment options. Many parents are afraid to go to major hospitals because this illness is considered “controversial” and families are not treated appropriately. It should not be considered controversial! Families are suffering.

now,please

Please consider this on an emergency basis! My 3 children have lived through this hell and have been successfully treated for infection-induced autoimmune encephalitis, but only by the grace of God and a ton of money and luck. We were one of the few fortunate families to actually stumble upon the proper team of doctors who knew how to treat them agressively with antibiotics, steroids, ivig, plasma exchange etc. Still, it took years to even diagnose them properly, and permanent damage has been done to my oldest child, who will require life long treatment to maintain health, due to the 3 year long lack of treatment after he presented with severe neurological symptoms. We have had to travel across the country for decades for treatment, paying for out of network doctors, fighting insurance company denials and hospital administrators to get the treatments they needed. My wife is an experienced Pediatric Registered Nurse and we would absolutely love to help in any way to create specialty Neuroimmune clinics across the country for these children and young adults, to receive the treatment they require to heal their brains.

Susan Langsjoen

Please end this madness!

As a mother and advocate of individuals with complex medical conditions; I support this petition.

sadly I can relate to the story my son is going through extreme isolation after being kidnapped under the color of law following a auto related injury at the age of 30 he has been kept isolated and medically neglected under a fraudulent guardianship under the color of law.

Please help. Our children and adult children are truly suffering.

My son #freeandrewfindley was medically kidnapped by california DDS and regional center and hospital. His neuroimmune medical care plan stopped, polypharmacy of psych drugs destroyed him. He suffers inhumanely isolated from us. We need neuroimmune clinics and trained supportive in patient ability to care for our medically complex individuals. Www.abc10.com/priceofcare

This is so needed for kids and adults.

While PANDAS may start as a pediatric issue, it continues into adulthood and this needed treatment needs to be available through adulthood.

My son has suffered from PANDAS since he was four years old. He was one of Susan Swedo’s first 50 cases at NIH. He will be 38 in a few weeks. He still suffers from PANDAS that causes severe OCD and needs the services that this petition is asking for so he can lead a normal life.

My son and so many others have been affected and are trapped in facilities that prescribe medications that don’t work and actually worsen the conditions. All medical testing and treatments have to stop to stabilize and they dont stabilize. Please create facilities that can help stabilize our sons and daughters while testing for root causes and treatments. We have a sick generation of brains and bodies inflamed turning to addiction and worse.

This petition speaks to a crisis that families like mine have lived through for years. Children with neuroinflammatory disorders cannot wait any longer for proper medical recognition and integrative care. The urgency is real, and every day without action costs these kids pieces of their future.

I was diagnosed with this 22 years ago. It’s no joke and these families need help desperately.

Dear Mr. Kennedy, As an advocate for children, you have seen the intersection between autism and Lyme. The intersection is wider, and includes MCAS and mold, and results in total immune dysfunction as shown in a type of encephalitis: basal ganglia encephalitis (PANS/PANDAS in the extreme). Thankfully, a major lab has partnered with a lab that detects this (Moleculera Labs), but it is hardly or sometimes never covered by insurance. Other means to detect it seem to be an FDG PET scan, but this relies on dyes. Thank you for listening to us as we try to help our kids and young adults with neuroinflammation. Respectfully, MH

My 18 year old son has PANS. We’ve been dealing with this for 10 years.