Ian & Abby’s Story

I have two children who are diagnosed with PANS/PANDAS. Both are now teenagers. While we began this journey when they were young children, it has only been within the last four years that we realized what they had was PANS/PANDAS. For us, we were so grateful that antibiotics and anti-inflammatories worked in mitigating the worst of the neuropsychiatric symptoms they faced. Unfortunately, they had been sick for so long without us knowing, their path to health was more complicated than we expected. We soon realized that while the medication seemed to support them, we could not get them off the medication without a significant relapse. And while they were stable, they continued to struggle with crippling anxiety. We knew we needed more specialized care, and someone who could truly dig in and identify what may have been missed— what was the actual trigger, and why could we not get them off antibiotics and anti-inflammatories?

We knew there was no way to continue searching without experts in the field who, sadly, did not take insurance. There was no way we would be able to pursue these specialists without support. PANS/PANDAS has been so costly to treat, even with providers who take insurance. All of the lab work, the medication, the ER visits, hospitalizations, and therapy bills.

We were so grateful to learn that JBC offered grants to those in need who have children with PANS/PANDAS. The process was incredibly easy to walk through, and the foundation was so kind and generous. It is because of the grant we received from JBC that we were able to access providers who are giving both of our children lifesaving treatment and care. These providers helped us get to the root of the immune issues, and explained so much of what is happening to our children and how to support them in regaining health. We are so grateful to JBC for their generosity and kindness. Without this grant, we would not be walking our children toward health.

Jennifer’s Story

We now have HOPE, thanks to JBC! HOPE for finding answers, HOPE for treatment, and HOPE for a cure. Our children are on the healing path of what has been a long, treacherous journey with PANDAS/PANS. Brighter days are ahead! From the bottom of our hearts, we are grateful to JBC and the donors who made this grant—and now treatment and HOPE—possible.

Abby’s Story

The change we saw in our daughter hit us like a tidal wave one day in November of 2018. We had no idea what was happening, and we began searching high and low for reasons explaining this sudden change in our once bright and bubbly 11-year-old. Was it the start of middle school? Was it the shifting of friend groups? There was no explanation that seemed to fit the severity of the emotional and behavioral changes that we were witnessing. 

Her health and ability to function continued to rapidly decline, requiring several hospitalizations. We felt hopeless. Almost 8 months later, at an annual physical, Abby’s pediatrician recalled that she had pneumonia two weeks prior to our request for a behavioral consult. I had heard the term PANDAS and began frantically researching. Thankfully her pediatrician was willing to draw some initial labs, where we found elevated antibodies for strep and mycoplasma pneumonia. Abby was immediately put on antibiotics. Things got slightly better, but she was nowhere near back to her old self. We knew we needed to run some more tests, but we had maxed out the knowledge of our pediatrician.

So we went to the Lyme / PANS Treatment Center in Cohasset. There, we were able to run some more diagnostic testing. These tests are not covered by insurance and are extremely expensive. Without the financial assistance of the grant we received from the JBC Foundation, it would not have been possible for us to run these additional lab tests. From these labs, we found elevated levels of mold toxins, active Lyme disease, Bartonella (another tick-borne disease known for causing neurological damage), and gut biome issues, all indicative of a PANS (Pediatric Acute onset Neuropsychiatric Syndrome) diagnosis.

Our journey with PANS has been nothing short of horrific and devastating. But because of the testing we were able to do with the JBC Grant money, we became armed with important medical information about the overload of infection antibodies plaguing our daughter’s body and brain. We took the lab results to a world-renowned Lyme neurologist in New York City, and she and a PANS specialist worked together to put Abby on a combination of three different antibiotics and IVIG treatments. I can happily say that today, Abby’s health is dramatically improving, and she is back to school full time after missing more than half of her middle school years. We now have hope for a future for our daughter that we could not see two years ago. The JBC Grant helped us get here, and we couldn’t be more grateful.

Melissa’s Story

Two years ago, my family received the JBC Grant to help us further our medical treatment for PANS/PANDAS. It was truly a blessing, as it offered us the ability to do more extensive testing on each of our three children. We were able to more accurately understand the complexity of their medical challenges, so that we could treat them effectively for Lyme disease/co-infections and mold toxicity. We are profoundly grateful for the support of JBC, and we would not be where we are today in our healing journey if not for their generosity.

Cory's Story

Cory's PANS/Lyme healing journey, which began many years ago, has been filled with incredible challenges and heartaches. The grant from JBC helped to provide Cory with the consistent treatment he needed. This helped to transform Cory's health, which has made such a positive impact on our lives.

We are ever so grateful to JBC for their generous, caring support, which has given our family hope and peace. Truly a blessing!

With grateful hearts,
Cory and family