An Urgent Call for Integrative Neuroimmune Clinics

Prayers for relief and help!

Prayers you find some relief

Help is needed.

Please help find some normalcy in their lives

For Myra ❤️

Due to a cruel provision in laws governing the Medicaid waiver program HCS (Texas), my daughter with PANS/PANDAS and autism is about to be ripped from her support services just as her condition is the worst it's ever been - due to my having applied for Social Security retirement after 42 years working. It's mandatory to apply for benefits for your adult child, and mandatory for that child to be taken suddenly off their supports/coverage for 45 to 270 days or possibly permanently while the caregivers struggle to re-apply for the program. This practice can kill - either the disabled program participants or their often elderly caregivers. Assessing whether their monthly benefit fall within program limits could be done without sudden removal from their medical and therapeutic supports; if benefits are too high for eligibility (very unlikely), action could follow that. Summarily removing the disabled from treatment and supports to save the program a little money - the apparent purpose of this practice -- is cruel beyond words.

We are personally affected by PANS with our daughter. It has been the biggest challenge as a parent and family to watch our girl suffer and be misdiagnosed for 2 years. She currently can not attend school and I have put my career on pause to be home with her. We are struggling to get insurance to help with IVIG in our state. She desperately needs this to reboot her immune system to get to a better base line. Please take time to listen to this real life crisis we and so many are facing. Thank you

This is so necessary!! My son had Lyme and two other tick-borne diseases, and he was dismissed by Children's National Medical Center. One of the leading pediatric hospitals in the nation did not know how to diagnose and treat his neuroinflammatory disease and PANS. This is an urgent need!!

Yes

In honor of Lily Prado

Healing is possible and kids need access to natural supports. Integrative care is essential for this population. My son is healed now, praise God. More people need access to this kind of care.

My daughter is one of the many, many children suffering from PANS. The lack of knowledge of the disease in the medical community resulted in years of misdiagnosis and suffering as the disease continued to progress, making treatment and remission more difficult. As we are now getting treatment (everything out of pocket as most in network providers do not treat, let along recognize) she is slowly but surely improving. How much better would her childhood have been had there been knowledge of this disease and access to appropriate treatment. I trust you will see the urgent need to bring attention to this situation and help the thousands of suffering children and families. Thank you.

Please take time to read this. We so desperately need the medical system to help our children. It is so difficult fighting for the proper care when your child is struggling.

Parent and advocate for studies for RARE and NORD.

Urgent help is needed.

Thousands of children are suffering and it often takes upwards of a year or more to get a proper diagnosis and finding knowledgeable doctors is difficult and expensive. Despite what may think this is a life threatening illness and is stealing the childhood of these children. Action is needed now!

Our Grandson is suffering greatly from this horrific illness. It’s taking a toll on his health, and on the family. Extremely hard to find the medical care that he needs to combat this autoimmune disease.

My son has pans

In Support of close family friends fighting through PANS/PANDAS that has ripped their family apart.

My daughter has been diagnosed with pandas disorder. I am in support of anything that can help.