This is from a shopping trip before DSRD.
Author: Kim Fish
July 2, 2025 – Getting Through the Stick
July 2, 2025 – Getting Through the Stick We arrived with 15 minutes to spare before his appointment and made our way into the new-to-us infusion center. I met Nate, the scheduling nurse, who had been so helpful on the phone getting our appointments all on the calendar. Within a few minutes, we were escorted…
July 2, 2025 – The Day He Got in the Car by Himself
July 2, 2025 – The Day He Got in the Car by Himself The morning of the 2nd, I woke up at about 6:20am to get ready to go. He was awake on the other couch and asked me what I was doing. I told him I was getting ready to go since we had…
Another Case of anti-NMDA Receptor Encephalitis
In my last post, I mentioned the book by Susannah Cahalan called Brain on Fire. I found an interesting article about another woman named Kassidy Anderson. She was eventually diagnosed with the same problem that Susannah had – anti-NMDA receptor encephalitis, a rare autoimmune disease that attacks the brain. It’s a pretty good read: https://www.uab.edu/news/health-medicine/brain-on-fire-film-helps-patient-receive-diagnosis#:~:text=What%20Vaphiades%20heard%20when%20he,NMDA%20receptors%20in%20the%20brain.
What is IVIG?
Here I sit at the OU Infusion Center in Oklahoma City, OK watching as my son, Osiyyah, is hooked up to an IV. We are on day 2 of treatment #4 of IVIG (once a month treatments of Intravenous Immunoglobulin). This unique approach has recently been being used to treat individuals who suffer with Down…
My Thoughts on this World Down Syndrome Day 2025
Today is World Down Syndrome Day. It is a global awareness day focused on raising awareness and advocating for the rights and lives of individuals with Down syndrome, with the theme “Improve Our Support Systems”. For those who don’t know, the date, 3/21, symbolizes the triplication of the 21st chromosome, which is what causes Down…
What is Down Syndrome Regression Disorder?
Due to our recent life change with my 20-year-old son (Osiyyah) who has recently been diagnosed with Down Syndrome Regression Disorder (DSRD), I felt motivated to publish a short YouTube video explaining what DSRD is. Here is the link to that video – https://youtu.be/36T4rz44pU8 . Watch it in full below: