cherylrad

We believe that Rituxan and PEX saved our daughter's life. Well worth the risks in our case. We are not out of the woods yet, but seeing improvement every month. She is also getting monthly IVIGs and had a tonsillectomy and adnoidectomy.

Our daughter is currently a patient at Stanford. She has been in a massive flare for the past 16 months. She has been on long term antibiotics, she has had 2 steroid bursts and finally a round of IVIG. None of these things were really working and she lost over 10% of her body weight due to food refusal. She was also extremely oppositional and began having psychotic episodes, during one of which she tried jumping out of out care while driving 45 mph. After so much weight loss and a downward trajectory, Stanford admitted her into the ICU, gave her an infusion of Rituximab, 3 plasma exchanges, followed by another round of Ritux 2 weeks later. She is still not eating and had to be placed into an eating disorder facility, where she still is. We do have hope though. She has interacted with us in a way that we have not seen for ages. She is engaging in conversation. She is still refusing to eat, but has a feeding tube, and the weight is coming back on. We know that the Ritux can take 1-6 months to take effect and we are hoping that we are seeing the beginning of improvement. I sure would love to talk to other parents who have had a similar course...