Methotrexate

[momofadult]

The neurologist has prescribed methotrexate for my son's PANDAS encephalopathy instead of the rituximab he orginally considered. I am a bit nervous about giving methotrexate to my son who also has a folate deficiency because methotrexate depletes folate, but the MD said he will follow his CBCs. My son is already on leucovorin (folinic acid) for his diagnosed folate defciency and this should help, but it really is only a guess about how much folinic acid he needs to address his folate defciciency. I hope the benefit of methotrexate is worth this risk. Anyone have any experience with methotrexate for PANS? Thank you.

 

[Dedee]

I don't have any experience. Just wondered if the neurologist said why he chose methotrexate over rituximab? I am sure there is a good reason. I would be concerned as you are though.

 

Dedee

[momofadult]

Thank you for your reply. His doctor chose methotrexate because he has not had experience with rituximab. He has tried methotrexate "a couple of times" and said it helped his patients "somewhat". This was not very encouraging especially since none of the patients he tried it on also had a deficiency of folate. I mentioned the names of other doctors who have tried rituximab (Dr. Frankovich and Dr. Latimer) but I didn't get the impression he would seek them out. I am venting here, but Its not comfortable having to work with people who have so little experience in treating your child's condition, but that is just how it is for all of us. There is no gold standard of treatment for this. Its trial and error. Nevertheless, I feel fortunate to even have a doctor who is williing to try treating him medically since so many parents on this board have had doctors who have dismissed their children's symptoms as purely psychiatric and not deserving of a medical work-up.