An Urgent Call for Integrative Neuroimmune Clinics

Lindsi Trameri

My son has PANS

Please. This is so needed. It would change our family’s life.

The system is decades behind sand adult systems are not even trying to address these issues leading to inexplicable suffering and life threatening diseases . What will happen when all the kids age out of pediatrics who although still woefully behind enter adulthood ?

Please help us receive treatment and care. 1 in 200 kids have autoimmune encephalitis, Pans/Pandas. Sadly our son is one of them. Help our youth. The earlier we have access to treatments, the better the outcome.

Our pandas/pans kids deserve better and more help

UNDIAGNOSED LYME AND BARTONELLA INFECTIONS WERE MY DAUGHTER'S PANS ETIOLOGIES.......IGENEX IS THE ONLY LAB THAT PROPERLY DIAGNOSIS THESE.......ALSO OUR MEDICAL COMMUNITY IS SO IGNORANT REGARDING THESE CHRONIC NEUROLOGICAL INFECTOUS, FURTHER TRAUMATIZING FAMILIES. READ MY STORY ON LYMEDISEASE.ORG TYPE IN JANICE SUTTON IN THE TINY SEARCHBAR......

This is so important! Our kids with PANS/PANDAS/AE need more help! We need more providers to treat Neuro/Psych symptoms and underlying Neuro/Immune issues. So many kids look like they have Mental health issues when those treatments do not work. Why?! It’s a Neuro-Immune issue and treating route causes such as underlying infections and Inflammation is the key!! We need more centers and providers who understand! Thank you

This is so very needed.

Parent of a child with PANDAS

Pkhg

This disease is destroying lives, futures, families, and for many hope and help does not exist. Hospitals will not treat because of psychiatric symptoms and psychiatric facilities refuse care because the child is medically unstable. This isn’t theoretical, this was/is my life’s story. Please help.

Anything to help !

This disease changes the lives of not only the patient, but the entire family. It steals childhood away. It goes undiagnosed and not properly treated due to lack of funds and understanding by clinicians, physicians, and insurance providers. Please help us help them.

The time for help was yesterday, do something NOW

My son lost ALL speech and ALL skills right after his 5yr old vaccinations. Everything Gone. When he was 9 he got sick with strep and the infection caused PANS - further brain inflammation. He was beating himself had separation anxiety and fits of non-stop crying. I was gaslit by the medical community and told he just needed psych meds. Those meds made his behavior worse. I searched everywhere for a Dr that would listen. After months of him suffering I finally found a neurologist that prescribed IVIG, but I then had to fight the insurance to cover it. He has had 6 rounds which has lessened his symptoms. His self injurious behavior, crying fits and separation anxiety has greatly reduced. But, he is 10yrs old non-verbal, still in diapers and has no skills. Dr’s should have helped my son when he regressed at age 5, they should have offered us IVIG then to bring down his brain inflammation from the vaccines. Had he gotten help from the beginning he might not be so severely disabled. The medical community needs to stop labeling vaccine injured/PANS kids as autistic. They need to stop prescribing psych meds and start prescribing IVIG to bring down brain inflammation that causes psychotic behavior. Having a special needs child is hard enough but having to fight for proper care makes it more difficult. And being middle class means we don’t qualify for help. So, the government that injured my son refuses to help him. We are on the long list for FL APD.

My daughter has suffered (and still suffers) horrifically from this traumatic disorder . Please help our families. (Note - Lyme and co-infections are very common triggers of PANS)

Help

We need better healthcare for our autistic children!!

Please please please.

My grandson has Pandas. I have ITP a low platelet disorder. Both diseases are not taken seriously. A hematologist’s the only doctor I can see and they don’t know much. My daughter is advocating for my grandson. They are Military and can’t go outside of their insurance coverage area. That needs to change. She has to deliver her research on the Pandas disease on a silver platter to be taken seriously. Please address these two diseases that as of now have no doctors willing to do so!! Both are considered auto-immune disorders.