We Are Brave - A PANS PANDAS Patient Story
I guess my advice for a PANDAS family would to always be there for your sick child. To always tell them that they are brave. Because we are. There may only be 1 in 200 of us, but we are the bravest...
A child's perspective on her journey with PANDAS
My name is Ella and I was diagnosed with PANDAS at age 13, now 15. Before PANDAS I was a four-sport athlete (basketball being my favorite), I loved hanging out with friends and family, I was doing...
It is clear that not enough parents and professionals are educated about PANDAS. My pediatrician apologized to me for not diagnosing my son properly. She said that the children in her practice that have PANDAS could not function at all and were curled up in a ball and could not go to school. She said she learned a lot that the symptoms can vary in severity, and not all PANDAS kids have the same symptoms.
Atlanta has some of the best pediatric hospitals in the country, yet they do not recognize this disorder (PANS/PANDAS) nor does insurance provide coverage.
I started searching for PANDAS specialists, only to find there were 3 in the state of Georgia and 2 of them were not taking new patients. Only 1 was taking new patients, but they did not accept insurance.
Unfamiliar with PANDAS… I had no idea there was a possible connection between his strep and his OCD symptoms. Upon our return, we finished up his antibiotic and within days he was exhibiting his OCD behaviors again.
In spring 2014, our family underwent a massive change. We had no idea what was happening, how it was happening or why it was happening. All we knew was that our beautiful, smiling, playful, energetic and affectionate, loving son had morphed into a child who could not walk out our front door, communicate with us or even eat a simple meal.
It’s one thing to have three physically sick kids, it’s another level to add the stressful neuropsychiatric symptoms of PANDAS/PANS. The financial burden . . . led us to file bankruptcy. For us, the financial burden is times three.
Georgia lacks doctors who understand PANDAS and can treat it. We had to travel to NJ, NC and IL to find PANDAS doctors who confirmed the diagnosis.
In seven years, we spent $280,000 on schools, doctor and psychology visits, medicines, tonsillectomy and IVIG treatments that would have been unnecessary had my son been correctly diagnosed.
In the next year, new and more severe OCD symptoms and tics emerged. An integrative doctor gave a rapid strep test and said it’s not PANDAS. We now know blood work is necessary to show heightened strep titers.
We are trying to beat this dreadful disorder. I figured out that when he is aggressive, loud and out of control, his body is being attacked by a virus causing inflammation in his brain.