need advice and support

[whyPANDAS]

just started Rituximab for son, who has long history of tick borne illnesses. and PANDAS. He is 21. He has been severely agitated for a couple months since stopped antibiotics and IVIG. He is blown up by Prednisone. Mayo Clinic recommended this but seems not to acknowledge possibility that TBI may still be present. Son having breathing problems...wonder if it is Rituximab, Prednisone or may Babesia which has reared its head.when he is immune suppressed by Prednisone. Very upset and don't know where to turn. Dont know anyone whose child has had rituximab. Would appreciate any communication.

Edited May 1, 2016 by whyPANDAS

[kakrpa]

I'm sorry you're struggling right now...it will get better, we have to believe this. Are you on facebook? If so, please join the group linked below and post your question there as well. HTH!

 

https://www.facebook.com/groups/189241844607935/

[michelleb]

There is a Rituximab treatment for P.A.N.S. closed Facebook page. Ask to join and ask there. My don had Rituximab in November. He has been getting slowly but steadily better since then (nothing had worked prior). I don't know if it could have given the Lyme a chance to resurface. Possibly since it does "turn off" the B cells.

 

Hope he gets better! This is so hard.