Help Adam overcome PANDAS, autoimmune encephalitis

What would you do if suddenly your child began having unexplainable symptoms such as tics, fine motor regression, intrusive dark thoughts, OCD, separation anxiety, loss of academic skills, enuresis, and sensory issues? You’d go to the ends of the earth to figure out what happened and help them get back to health.

WHAT IF YOUR CHILD’S HEALTH INSURANCE COMPANY REFUSES TO PAY FOR TREATMENT? You’d come here.

This is Adam’s story. At age 7, Adam developed debilitating symptoms after a sinus infection. This gifted child, who could read before Kindergarten and played the piano, suddenly could not add 4+2. He started having extreme issues in school with academics and functional skills and ended up with special education services. Adam’s illness progressed so severely that he was finally hospitalized for six weeks. During that time, I spoke with a pediatric specialist who knew Adam had developed an autoimmune illness called PANDAS or PANS. It stands for Pediatric Autiommune Neuropsychiatric Syndrome. It’s the result of infections - usually strep infections, but it can be caused by other infections as well. Basically, your immune system tries fighting the infections but starts attacking healthy cells in your brain, causing inflammation. Brain inflammation is debilitating - children can’t think or function normally. Inflammation in his gut also caused numerous food allergies and other gastrointestinal issues. This specialist recommended treating the source of Adam’s illness - his immune system. Adam received high-dose IVIG when he was eight years old, and after follow-up treatment, I thought he was cured. He lived his best life for six years, becoming an accomplished cellist, an Eagle Scout, and getting accepted to a highly selective college.

But this past year, Adam’s world came crumbling down. After another sinus infection in the fall, his health rapidly went downhill. He had breathing problems and what we thought were ulcers. He developed joint pain and brain fog. It finally got so bad that late this spring, he was tested for infections. SURE ENOUGH - Adam had Lyme disease, two viral infections, strep in his tonsils, and mold mycotoxins in his blood. All of these were causing his immune system to stay in overdrive, and his PANDAS/PANS was back! Once again, I contacted his PANDAS specialist. He’s started treatment with antibiotics and antivirals. Mold mitigation specialists found sources of mold in our house, which were poisoning Adam. Over the past two months, Adam has had dozens of doctor’s appointments and blood tests. Some have been covered by insurance, and some have not. He had surgery to remove his tonsils and adenoids, and we had to leave our house for six days while the mold specialists tore out the drywall and made repairs. These challenges have led to thousands of dollars of out-of-pocket costs.

Then… there is the cost of the IVIG treatment he needs to reset his immune system. It costs $27,000. Health insurance has refused to pay.

We will appeal - but we NEED your help urgently.

The primary treatment Adam needs to reset his immune system is an Intravenous Immunoglobulin treatment. It is an infusion of immune proteins prepared from human plasma. After that treatment, his immune system will heal and begin acting normally. With support from other medication and elimination of allergens, Adam will be back to baseline by next May.

ADAM NEEDS THIS IVIG NOW!

He can’t wait; symptoms only get worse.

We must pay upfront for the procedure and appeal the health insurance decision. We still have to pay $12,750 out-of-pocket even if we win the appeal.

Please help us raise $10,000 towards Adam’s IVIG treatment. Any amount helps.