peglem Posted November 2, 2009 Report Share Posted November 2, 2009 My daughter's ped referred us to the rheumatologist. We had the appt. this morning. A few years ago, this rheumy dismissed us, saying my daughter is just a strep carrier and not PANDAS because the ASO & Dnase titers were not elevated. But this time the Cunningham studies and Allie's results were sent for him. So, we talked...about lots of things. He admitted he doesn't know very much about PANDAS...I shared some of what I know about the Cunningham work and successful treatments...That I would like to do Plasmapheresis 1st, and that we are scheduled with the immunologist tomorrow. He ordered some bloodwork--those darn ASO/AntiDnase again! (she always tests low). He said he needs time to look at the studies-I also gave him a copy of the mouse model paper, Swedo's plasmapheresis/IVIG trials, and that turkish paper w/ the 4 adult case studies w/ PEX. We'll go back in 2 weeks....I've been and will continue to pray very hard about this. I feel encouraged in that he admitted ignorance, but seems open to learning about it....Hey look at me, I'm a medical professor now! Link to comment Share on other sites More sharing options...
faith Posted November 2, 2009 Report Share Posted November 2, 2009 LOL! ... good work dr. peg. Link to comment Share on other sites More sharing options...
ajcire Posted November 2, 2009 Report Share Posted November 2, 2009 Oh I am crossing my fingers for you!!! I definitely am much more respect for the doctor who says I don't know and need to learn more than the one who is close minded. Link to comment Share on other sites More sharing options...
Buster Posted November 3, 2009 Report Share Posted November 3, 2009 We're thinking of you too. Link to comment Share on other sites More sharing options...
peglem Posted November 3, 2009 Author Report Share Posted November 3, 2009 Thanks. If any of you are prayer-type people those are much appreciated, too! Link to comment Share on other sites More sharing options...
nevergiveup Posted November 3, 2009 Report Share Posted November 3, 2009 I am praying for you and your daughter. Keep trying. Have you ever had her ANA tested? Rheum like this indicator to justify an autoimmune disorder and treatment. Link to comment Share on other sites More sharing options...
peglem Posted November 3, 2009 Author Report Share Posted November 3, 2009 I am praying for you and your daughter. Keep trying. Have you ever had her ANA tested? Rheum like this indicator to justify an autoimmune disorder and treatment. Thank you for the prayers- this rheumy tested ANA last time we saw him, it came up negative. Link to comment Share on other sites More sharing options...
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now