desperately sick/starting Rituximab infusions - what to expect?

[LaurensMom]

I'm confused by your reply. New to forum - I was replying to question from Anna on Rituxin. How do I reply to her directly?

[T_Anna]

Thanks LaurensMom. So are you back home? Ds16 will be happy that it's not a mandatory stay.

 

T.Anna

[Pandas]

Once you have insurance approval, consultation at Georgetown, infusions 4 Thursdays in a row. Many kids have some mild reaction on first infusion so they have to run it very slow. Some itching in her throat. My daughter had to stay overnight for first infusion, so they could run it very slow. She has been sleepy, but feels fine after i fusion #1. Recommend staying at university hotel. We tried to stay in Bethesda - it was inconvenient w/ unexpected hospital stay. Please let me know if I can help in any way

[Pandas]

Can u email me I'm not sure how to get ahold of you

[michelleb]

Can you tell me how the write-in inclusion went at Georgetown? We are supposed to go in next week. We have very little information. My does better if we can give him an honest idea of what to expect afterwards. He has been very disappointed by what he sees as false promises and misleading information - such as telling him IVIG will help and then only after he has had it that he might get worse first (he did and ended up in the hospital), and then telling him it will take 6 weeks, and then at 6 weeks telling him it might take a few months, etc.

 

Does Rituxin make PANS kids feel worse before they feel better? I oddest mean headaches or nausea, I mean rages, anger and suicidal obsession. He has gotten a little better but not all the way better. SHuld we expect a regression before he improves?