Elise has adjusted to having the gastrostomy tube after her surgery Tuesday. She's had some pain, especially if the tube gets tugged in any way, but that has improved a lot in the last day. Otherwise she is continuing the home treatment for Lyme Stop, and that seems to be going well. She will be re-checked by the Lyme Stop doctor again in December. Last week we also stopped all IV antibiotics and had her PICC line removed, we stopped all other anti-microbials, and we're giving her body a break.
Here is a plea I posted on Facebook this morning:
Please consider donating to a cause very close to my heart, Pediatric Research and Advocacy Initiative PRAI. Since 2011 Elise has been sick with PANS/PANDAS and other chronic autoimmune illnesses. She was not properly diagnosed until 2016, and since we started fighting this monster so late in the game it has been an excruciatingly uphill battle. The reason it was not diagnosed early was that there is a ton of misinformation out there in the medical community, and some of the dozens of doctors we have seen simply deny PANDAS is a real illness. We desperately need funded research to unravel the causes of PANS/PANDAS, and to get the medical establishment information so that they can help their patients. PRAI was started by a parent who envisioned helping our kids as quickly as possibly by cutting the middle-man out of the equation; parents and concerned others funding this critical research without having to wait for big pharma to figure out how they can make money off our kids' suffering. One initiative we hope to fund is starting a biobank to look at the genetic similarities between our kids. Please give as you are able. Thanks!
Here is the donation link: