Elise has been on IV antibiotics since mid-April. We started with Ceftriaxone, and then added Azithromycin. She is also taking anti-virals, anti-fungals, LDI, and several other supportive herbs and supplements through the feeding tube, in addition to supplemental feedings. The goal is to get her infections under control so that we can plan the next PANS/PANDAS treatment, which will likely include more IVIG treatments or other therapies.
I’m sure Elise is feeling frustrated that this journey has taken so long. It’s been one year since her IVIG infusions in Chicago, and the last year has held few bright spots. We had hoped for a quick turn-around of her PANS/PANDAS symptoms when she started the IV antibiotics this spring, and we have noticed some improvements, but it is clear now that we are on a longer path. She has put up with much discomfort with having the NG tube in place since February, and the PICC line since April. She is a warrior, and we are so proud of her!
Having this diagnosis is frustrating: there are no known outcomes, no typical timelines for improvement, no standard treatment protocols, and no documented success rates. We often feel isolated and discouraged, slogging through uncomfortable therapies, pushing through interminable appointments and red tape with our insurance company, and trying to figure out the course of treatment when some of our health practitioners don’t grasp how complicated Elise’s situation is.
In the midst of this hardship we have much to be grateful for:
- David is one year post heart surgery and fully recovered.
- My M.Div thesis was accepted (now waiting for it to be read by my committee)
- Isaac is doing well at Madison and has chosen to major in Chemistry (following in David's footsteps)
- Rachel successfully completed her sophomore year as a home schooler
- It looks like our honeybees are off to a spectacular start in honey production this summer
We are grateful for your continued prayers of support! Thanks.