In the year of 2009, after a mysterious rash spread across DJ’s body, the world as we knew it changed forever. Within a week, he lost his ability to speak, leaving us bewildered and concerned. A diagnosis of Autism Spectrum Disorder (ASD) was given, and DJ was enveloped in a label that others seemed to want it to stick indefinitely.
Fast forward to 2017, and the once-vibrant MJ, the young and spirited girl, began showing signs of acute neuropsychiatric syndrome and mitochondrial disorders, along with genetic mutations that puzzled and worried us. The local doctors did not believe PANS was a real diagnosis. Misdiagnoses led to confusion, struggles at school, and a winding road towards an accurate understanding of her condition.
In the journey into finding out what stole my little girl, I included DJ in the diagnostic journey. I finally found a Doctor in 2018, that diagnosed the kids with PANS , mitochondrial disorders, and genetic mutations. They were receiving treatments that offered a little bit of relief. After years of oral treatments it was determined the kids will need IV or injected medication to kill off the infections as their bodies were not absorbing the medications.
The journey through symptoms and medical treatments was fraught with challenges that tested our resilience. Seizures, OCD, and various manifestations of the disorders cast a shadow over our daily lives, affecting not only DJ (18) and MJ(13) but also their interactions with the world outside.
Amidst these trials, the unimaginable happened when their Dad chose to leave during the heart of the global pandemic. He has not attempted to see them since. Left with uncertainties and fears, myself, DJ, and MJ found refuge with the maternal grandparents, who provided solace and support during times of need.
Life brought joy in unexpected places, despite the trials we faced. Bonds grew stronger as we persevered, determined to make the most of each day. The passing of Grandpa in 2020 followed by the loss of Grandma in 2022 brought grief but also a determination to keep moving forward.
In search of answers and proper medical care, I made the decision to relocate to access treatments at Stanford IBH Clinic. Though challenges persisted as we waited for care, our determination to enjoy each day remained unwavering.
The kids are on the waitlist for the IBH Clinic.
/currently August 2024
DJ has been fighting chronic Lyme with bartonella, he continues to get new stria marks all over his body. He has rage attacks, that come out of nowhere, full body pain, he has been needing to lay down with his head elevated as well as his legs to have some relief. He continues to not be able to access his speech.
He is supposed to be on medication to kill the Lyme, it is 500 per month out of pocket.
MJ is easily fatigued, she has been having seizures for 2 years, her emotional state is a never ending rollercoaster, her OCD and intrusive thoughts consume her every day. She is supposed to be on medication , it is 300 out of pocket per month.
To see the New York doctor is 1400 per appointment.