Rebecca’s Inspirational PANDAS Recovery
Hear Rebecca’s Story (age 6 at onset)
In the spring of 2009, after multiple positive strep infections, Rebecca’s parents noticed a change in their child—and later a PANDAS diagnosis. Hear from Rebecca and her parents about their journey through a PANDAS diagnosis and her recovery.
PANDAS/PANS is a commonly misunderstood disorder in the medical community, which can make the road to diagnosis challenging. Parents spend countless hours searching for new research, specialists and possible answers that could help explain their child’s sudden changes. This experience can be overwhelming for families to adjust to, all while dealing with the stress and uncertainty around their child’s health.
Check out our resources on how to diagnose PANDAS/PANS as well as our blog on what to do after a diagnosis. And just remember: You will get through this, and we’ll be here to support you along the way.
How long does it take to diagnose PANDAS?
Since there is no definitive test for PANDAS/PANS, getting a PANDAS diagnosis for your child can take time. There may be times when treatment efforts are unsuccessful, or doctors unfamiliar with PANDAS/PANS dismiss patients’ symptoms. To avoid this, it is best to work with a healthcare provider familiar with PANDAS/PANS. Find help near you with our directory of U.S.-treating professionals.
The Road to PANDAS Diagnosis: Rebecca’s Story
One benefit of staying connected with families in the PANDAS community is that they are often willing to share their stories to spread awareness and contribute to the shared feeling that no one is alone on this journey. Consequently, PANDAS/PANS patients recover and pass along their stories of hope and perseverance to those currently struggling.
One of these patients, Rebecca, courageously shares her PANDAS recovery story. Today, Rebecca is a recent high school graduate gearing up for her freshman year of college. Her hobbies include choir, theater and writing. But when Rebecca was just six years old, she felt helpless, trapped and scared due to her sudden, intense onset of PANDAS/PANS symptoms.
Her pain and struggle were so complex, that at the time, she struggled to put it into words. Rebecca recalls being a kindergartner, unable to walk, speak, eat, drink, breathe or use the restroom on her own without facing intense, intrusive thoughts and movements. She also experienced severe OCD, anxiety and panic attacks.
With this overnight and dramatic shift in behavior, she and her parents knew something was very wrong. Thankfully, Rebecca’s pediatrician had attended a brief seminar about PANDAS/PANS and was able to point them in the right direction. As Rebecca’s parents began to research these conditions, they learned of the PANDAS Network. Our organization connected them with a neurologist who was able to diagnose Rebecca and discuss PANDAS treatment options with her and her parents.
After her diagnosis, and at the recommendation of her physician, Rebecca started consistently taking prednisone to control her OCD episodes. Steroids like prednisone work on active infections and help to reduce inflammation in the brain. Thus, they can help to improve the severity of symptoms in PANDAS/PANS patients. Within weeks on this new treatment, Rebecca’s symptoms improved.
Throughout elementary school, Rebecca also took antibiotics to prevent future strep infections that could trigger another PANDAS episode. With the right medication—and under the care and guidance of her doctor—Rebecca was able to recover and manage her condition.
She and her family feel very lucky—because the medical community is often ill-informed about PANDAS/PANS, diagnosis often takes months or even years. Since there is no one-size-fits-all approach for diagnosing and treating PANDAS/PANS patients, provider education is an important component for helping families navigate this condition. PANDAS Network works to spread awareness of PANDAS/PANS in the medical community and offer resources for clinicians, parents and educators to stay up-to-date on the latest science and best practices for PANDAS/PANS.
As Rebecca heads to college and reflects on her journey, she offers this advice to kids who may be dealing with PANDAS/PANS:
“Organizations like the PANDAS Network are important, because of one, the awareness they raise, and two, the communities they build. If I could say one thing to a kid who has PANDAS it would probably be, ‘I know you’re exhausted. You won’t be dealing with this forever. There are so many things you can do to make it easier.’”
How is PANDAS disease diagnosed?
We’ve talked to countless parents who are or were in your shoes at some point. Years later, these parents can still remember the impact caring for a child with PANDAS/PANS had on them. For parents currently searching how to diagnose for their child, PANDAS Network offers several resources to provide answers to the many questions you may have about this condition.
Patient stories like Rebecca’s serve as a reminder to parents and children dealing with PANDAS/PANS that they are not alone. Although you may feel like this is a one-in-a-million experience, other families know all too well what you’re going through. PANDAS Network provides opportunities for families to get together and share stories, tips and lessons learned for navigating these conditions. Connect with other families impacted by PANDAS/PANS by joining one of our support groups in your local community.