An odd day

[Megs_Mom]

Was able to work w Dr. L today - it was very interesting, and I would certainly agree with everyone that recommends her. After reviewing, she strongly urged me to get the Immunological bloodwork done - which we are scheduled for in 2 weeks. She felt that we have an auto-immune condition - but felt that we need to firmly rule out Lupus before finalizing on PANDAS as the diagnosis - as the treatment and care do have significant differences. She felt that we needed to look again at Lupus, due to her high ANA (1:1280 speckled) and her Peptic Ulcers (likely inflamatory related). She felt that her CamKinase would be elevated either way. We actually did test extensively for Lupus last year, but since we did the tests outside of an exaserbation, she thought that might be insufficient, and wants another Rheumo to review tests and decide what to run next. I do remember from research on this last year, that a classic presentation of LUPUS in children is Neuropsychiatric conditions.

 

Two steps forward, one step back. Anyone else working on both Immunology and Rheumatology testing?

[Suzan]

Two steps forward, one step back. Anyone else working on both Immunology and Rheumatology testing?

 

Not yet but you know I soon will be. Can I just follow you around and go to all your doctors too?

 

Lupus... really? Wow... I did not know that about the neuro aspect of the condition. I am glad you will be getting your workup soon. This is all so complicated. Do you have a rheumatologist that you work with that you like?

 

Susan