By: Stacie Manna The father’s role in a PANDAS Family is one that can make him feel alone and invisible, some days more than others. This Father’s Day, I am here to remind you, dads, how important you are. We see you, feel you, and have not forgotten about you. PANDAS is a family illness… Continue reading We See You, Dad!
If your child’s PANDAS symptoms are impacting their ability to succeed in school, a 504 accommodations plan may help. We break down everything you need to know to set up accommodations with your child’s school. One of the chief challenges of PANDAS is how it affects children’s ability to manage during the school day. That… Continue reading How to Get 504 Accommodations for Children With PANDAS
Micaela Widman’s children Kai and Brielle both suffered for years from undiagnosed autoimmune encephalomyelitis. Learn how they finally received life changing diagnoses and treatment. Micaela Widman and her husband Jerad live in Overland Park, Kansas. They have six children: Kai (22), Jace (20), Kale (18), Sterling (16), Brielle (14), and Brenna (10). From 2011 to… Continue reading Kai and Brielle’s Story: How a Family Coped With Nearly a Decade of PANDAS
Dealing with PANDAS affects the whole family. Focusing on mental health and wellness for caregivers, parents and siblings may not be easy. But it is a necessary step to overcoming the long-term effects of this disease. A child experiencing PANDAS may feel confused, overwhelmed and scared. We certainly want to support our children through these… Continue reading Families With PANDAS: 5 Ways to Cope and Practice Self-Care
Research and studies show a strong link between PANDAS/PANS and genetic or hereditary factors. While researchers haven’t found any one specific gene directly linked to the diseases, there are several family factors that may provide insight into an affected child’s symptoms and reactions. PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infections) and PANS (Pediatric… Continue reading Is PANDAS Hereditary or Genetic?
In the past five years, Stacie, her husband Peter, and their two children, Collin and Autumn, have been on a long journey with PANDAS. At first they didn’t even know what PANDAS was and it took years for Collin and Autumn to receive a diagnosis. Once they were able to get treatment, they faced the… Continue reading A Family’s Long Journey With PANDAS: Fighting for Recognition and Support￼
Amanda was diagnosed with PANDAS when she was 14 after six months of seeing multiple specialists who either misdiagnosed her or dismissed her symptoms. Her symptoms largely resolved when she was a junior in high school. She is now in her early 20’s, a junior in college on the pre-med track interested in pediatric primary… Continue reading Amanda’s PANDAS Journey: From Misdiagnosis to Recovery
PANDAS and PANS are commonly misunderstood disorders that are often stigmatized in the medical community. Learn the truths about PANDAS as we debunk top PANDAS/PANS myths in this blog post. As a parent or caregiver of a child with PANDAS/PANS, you face a long journey looking for explanations, guidance and support for your child’s disorder.… Continue reading Myths and Misinformation About PANDAS
Diagnosing PANDAS can take time, especially when working with providers unfamiliar with the disorder. Continue reading to learn how to find the right doctor who treats PANDAS syndrome. Parents know the PANDAS journey is challenging, whether they have been walking down this road for weeks, months or even years. If you recently found out about… Continue reading How To Find the Right Doctor for PANDAS
Italian researchers conducted a study to document the clinical experience of PANDAS patients receiving IVIG treatment. The results show promise for the future of IVIG’s role in treating patients. In a 2020 study by Pavone et al., Italian researchers found significant symptom reduction in children with PANDAS/PANS. The article, “PANS/PANDAS: Clinical Experience in IVIG Treatment… Continue reading IVIG Treatment Shows Promise for 55 PANDAS Patients in New Clinical Study from Italy