October 9, 2023 – Infectious Brain Inflammation—Child in Crisis
In honor of PANDAS PANS Awareness Day, we wanted to share Gus & his family’s story about their personal journey and subsequent experience with IVIG.
A letter from Gus’ mother to KabaFusion Founder and CEO, Dr. Sohail Masood:
Dear Dr. Masood,
There are no words to fully express our level of appreciation for your company, your company’s mission, and most importantly, the humanitarian impact of the patient-focused care at KabaFusion. Our family would like to express our gratitude and give recognition for KabaFusion’s exemplary medical team. These individuals have gone above and beyond to garner the medical treatment our child needs and deserves.
After researching your company’s mission, along with your philanthropic advocacy, I felt compelled to share our story with you (please see attached). We are finally on the road to legitimate healing because of the herculean efforts of KabaFusion’s medical superheroes. Your team achieved what we had determined as an impossible task: securing therapeutic, insurance-based treatment for our sweet Gus. We feared the very real concept of losing our child because of an inability to secure this life-saving treatment.
Rob Scott was our initial KabaFusion contact; this introduction was the catalyst that changed our lives forever. Rob immediately made our child’s health and well being a priority. He has handled the subsequent PANS/PANDAS referrals I’ve sent to KabaFusion with expert care. Additionally, Melissa Kett contacted me to garner information regarding our case and our insurance situation. Like Rob, Melissa went above and beyond at every turn. Her guidance and expertise made insurance approval unexpectedly seamless. She willingly consulted with the insurance broker for my husband’s company to ensure future infusions. Our KabaFusion nurse, Tammy Piver, has been a true angel on earth; she is genuinely passionate about her patients, especially her PANS/PANDAS patients. This subset of patients is often discounted, overlooked, and disregarded; Tammy Piver (and nurse Cindy) are invaluable resources for the PANS/PANDAS community. And KabaFusion’s real deal medical superhero is Dr. Laila Alqadri; she is a true champion for your patients and your company. Her efforts to secure treatment via peer-to-peer and external appeals is nothing short of miraculous. Your team is fulfilling an enormous unmet need within the PANS/PANDAS community. Dr Alqadri and the KabaFusion team lead with unparalleled expertise and compassion. For the first time, our child received a sense of urgency from the medical community equal to the severity of his disease state.
Now that we have begun our journey to healing, I will continue to tout KabaFusion in our regional area, and also within my connections to the nationwide PANS/PANDAS community. KabaFusion’s standard of care and patient advocacy is unique and deserves the highest accolades.
Our family could not be more grateful for KabaFusion. Great companies are made from great people; KabaFusion has an amazing group of humans that are making a HUGE impact on the medical community. Thank you for being awesome at every turn.
With continued gratitude,
– Erin R.
Photos of our Gus, in 3rd and 4th grade respectively.
These photos illustrate the devastation this disease can inflict on a kind, energetic, creative little boy in such a sudden and dramatic way.
Onset of PANDAS—Our normally well-behaved son was stricken with motor tics and behavioral regression
Gus was diagnosed with PANDAS (Pediatric Autoimmune Neuropsychiatric Disease Associated with Streptococcus) at age 6. Gus’ symptoms included sudden onset of motor tics and behavioral regression associated with chronic sinus/strep infections. A long term antibiotic regimen alleviated symptoms at initial diagnosis. Like other forms of autoimmune encephalitis (AE), PANDAS is an inflammatory response within the basal ganglia. Autoantibodies are generated from past infections that attack the basal ganglia, a region of the brain that controls movement and behavior.
Resurgence of PANDAS—We lost our little boy
Gus’ PANDAS re-emerged with a vengeance at age nine, eventually rendering him incapable of functioning in a school or home setting (cognitive, physical, and behavioral symptoms). The most debilitating symptom was his complete inability to experience joy. He became symptomatically worse with each subsequent infection. Symptoms would improve with introduction of an antibiotic, followed by exponential regression. At the height of his disease state, Gus was unable to compute simple addition, experienced bouts of psychosis, severe OCD, periods of bed wetting, emotional lability, and he continued to have ever-present, ever-changing verbal and motor tics.
The Hardest of Times—We could no longer attend public school in 4th grade
Gus became incapable of attending school or leaving the house. We pulled him from 4th grade the week he jumped out of the cafeteria window and jumped a fence. He had another flight episode the following day, so we no longer felt comfortable sending him to school. This is a child who is a zero behavior problem at school—he is beloved by his school administrators, his teachers, and his peers.
Confirmed serious Brain Inflammation: More Invasive/Higher Risk PLEX Treatment Approved by Insurance
A positive blood test confirmed brain inflammation, warranting insurance coverage for six rounds of plasmapheresis. Gus had a central line placed and completed four of six rounds of treatment; treatment was discontinued because he contracted a life threatening circulating MRSA infection. He spent fifteen days recovering inpatient at VCU Medical Center. The four completed PLEX treatments were successful in reducing, but not eliminating, symptoms.
Desperate for life saving IVIG Treatment. At risk for permanent damage.
He was capable of returning to school in Fall 2022. We quickly learned he was only able to participate half days. In October 2022, he contracted a post covid sinus infection. Once again, we were forced to remove him from school entirely—due to exponential regression following the sinus infection. He is currently being treated using two prophylactic antibiotics, anti-inflammatory meds, intermittent steroids, mood stabilizers, and various supplements. In order to function at a minimal level, he requires 800mg of ibuprofen every four hours (waking hours) and two naproxen to get him through the night. He has been on this regimen for eight months and he is at severe risk of contracting a GI bleed. This is not sustainable.
Our story has expanded since we initially put together “Gus’ Story.” We are in the process of scheduling brain surgery for our sweet Gus. Throughout our journey, the entire KabaFusion team continues to be such a bright light. At every unexpected turn, KabaFusion continues to go above and beyond for our family. Gus is currently receiving life-saving monthly IVIG treatments, administered by KabaFusion’s trusted PANS/PANDAS nursing team.