Last Monday Elise had a second NG tube placed at Children's (the first one was removed about three weeks ago at the insistence of Children's staff.) She is now receiving fluids and a whole foods supplement. We're at home and have had home health visits for supplies and training. We're hoping with more nutrition she will be in a position to have her next round of PANDAS/PANS treatment in about a month.
Both Elise's local PANDAS specialist (Stephanie) and her primary doc (Dr. McCarthy) were at the national PANDAS conference last weekend, and Stephanie also attended the MAPS Conference this week. We're hopeful that they will come back with some good ideas for new treatments.