trintiybella Posted December 1, 2013 Report Share Posted December 1, 2013 Dr. N. thinks it is inflammation with my girl, and wants to do some tests. My concern is what if he wants to try steroids with her. Dr. Jones said steroids are not to be given if a child has lyme/bartonella, which she has??? Link to comment Share on other sites More sharing options...
JoyBop Posted December 1, 2013 Report Share Posted December 1, 2013 (edited) Go ahead and do the tests. He hasn't prescribed anything yet. You can tell him how you feel and what your concerns are about the steroids. You have the final say in what you give your child. Its worth seeing what her recommends. Edited December 1, 2013 by joybop Link to comment Share on other sites More sharing options...
Hrosenkrantz Posted December 1, 2013 Report Share Posted December 1, 2013 Agree with joybop. Do the tests and then worry about the next step. melanie 1 Link to comment Share on other sites More sharing options...
JoyBop Posted December 1, 2013 Report Share Posted December 1, 2013 Is this Dr. N at NYU? If so, I would personally be willing to try anything he says, and then if it goes awry you still have a very valuable piece of information. I dont know him personally but it sounds like he is absolutely amazing at figuring these very difficult cases out. I myself have had to try some things that have been outside of my comfort zone like trying medications that I never thought I would give to an 8 year old child. Some have been beyond amazing and some not so much. But you will never know until you try. They are all short lived, but the information gained is permanent. You make the final decision...Best of luck! melanie 1 Link to comment Share on other sites More sharing options...
nicklemama Posted December 1, 2013 Report Share Posted December 1, 2013 (edited) I agree with JoyBop. Do the tests. Do what he recommends. You are going there to get the best from a brilliant mind. Steroids did not affect my son and he had two coinfections, albeit, they are not Bart. If I had an appt with Dr Najjar and my son was being hospitalized for testing, I'd follow his lead and not look back. You chose him because you trust him. If he can't get it done,who can in the US? Edited December 1, 2013 by nicklemama Link to comment Share on other sites More sharing options...
cobbiemommy Posted December 1, 2013 Report Share Posted December 1, 2013 I would trust Dr. N and if your child is under medical supervision; the outcome should still be favorable. My son had fantastic results on a steroid taper. It really highlighted the autoimmune component for his doctors. Best of luck to you. Link to comment Share on other sites More sharing options...
Hopeny Posted December 1, 2013 Report Share Posted December 1, 2013 It seems like your daughter has a lot more going on than just Lyme, I think you have described complex issues since birth. It seems worth it to try something new Link to comment Share on other sites More sharing options...
trintiybella Posted December 1, 2013 Author Report Share Posted December 1, 2013 I will. She goes Dec. 17th. Their trying to get her a bed sooner. She is declining BIG time. Thanks and I will let you know how it goes and what he finds. Link to comment Share on other sites More sharing options...
Guest Posted December 1, 2013 Report Share Posted December 1, 2013 I would trust Dr. N. I am continuing with their treatment. They are brilliant there, absolutely brilliant, they know their stuff. Read his research papers, guy knows what he's talking about!!!! I was not prescribed steroids personally. Link to comment Share on other sites More sharing options...
trintiybella Posted December 2, 2013 Author Report Share Posted December 2, 2013 Ophelia, I'm thrilled to hear you sound so good. You have been through so much and deserve it! Do you have links to Dr. N.'s research papers Link to comment Share on other sites More sharing options...
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