As I think about typing this I am thinking.... Lisa is going to be both very happy AND very furious!!!
We love you Lisa and are so thankful we have found a friend such as you to "watch our back" with all of this!!!!
So, anyway, I am happy to say that we have been blessed with a 3rd wonderful local Dr.!!!! I truly believe we are on the road for answers for Brie with her 3 latest WONDERFUL Dr.'s now helping us push through the mud to get to the next intersection!!!!!!!!!!
Brieann had a consult with a Pediatric Endocrinologist today. We spent 2 hours with her! I could tell she was VERY overwhelmed with all of the history and Brie's complicated case... and yet she hung in there trying to piece it all together and asking many pertinent questions and giving "point blank" input into some of the concerns (nice way of saying "incompetence or lack of concern") from Dr.'s along the way..... She was not putting them down or "bashing" them in any way but very professionally stating her concerns about their lack of follow through, follow-up, etc. She wasn't referring to their understandable lack of knowledge of rare diseases but their ability to "do tests and take a patients money when they knew from the start that their tests were not geared to Pediatrics and thus would not give adequate results and never referred us elsewhere in the beginning or after their tests failed to give us answers." I greatly appreciated her honesty and concern for Brie's long standing issues and the results we have received thus far with all of the testing, etc.
Also, she is actually the VERY FIRST Dr. in 8 1/2 years that jumped on the concern of Brie's "small stature" and showed great concern for this. Due to this and a multitude of other concerns she wants Brie to be seen by a Dr. who specializes in Metabolic Disease and/or a Geneticist. Unfortunately we do not have any of these "specialty Dr.'s" any where close to us so this won't happen overnight.
She was concerned with Brie's documented history of Tachycardia, Hypoxia, episodes of barky/croupy cough without illness and lethargy and will be contacting one of Brie's Dr.'s to get a Pulmonary Function tests scheduled. She still believes that her heart murmur is benign - although her cardiac issues have not been worked up. So I will continue to pursue this issue with others.
Lisa... this is where you... I know will provide me input
She is the Dr. who had an Adrenal Stimulating Test scheduled for Brie on Wed. 2/23. These tests are typically done right in the office by her PA. Needless to say that after our visit she canceled the test. She said that "Brie is way to labile to take a risk like this" and that she would not consider doing this test unless Brie can be hospitalized in an ICU for this test where proper medical treatment is readily available if things would not go well. Unfortunately our one and only Hospital has in the last few years hired "Hospitalist" to provide care for inpatients. Most of these Dr.'s are foreign and have difficulty with our English language and NONE of them are trained in Pediatrics!!!!!! And yet the Hospital recently notified this Pediatric Endocrinologist that their "Hospitalists" will provide care for her patients when hospitalized. Needless to say she is very concerned and very irritated over this! She deals with Pediatrics day in and day out and now she feels she has been "pushed out" of caring for her patients when they are hospitalized. Not only are they "not pediatric trained but they (she believes) have no knowledge when it comes to very complicated cases such as Brie's. She will not allow a Hospitalist to admit and care for Brie for this test and is going to contact Brie's Pediatrician and her Allergist / Immunologist in hopes that one of them still has privileges to admit and will ask them to assist us and follow her for this test.
She was so "flustered" over what we have been through, and the lack of answers we have, that she had difficulty even gathering her thoughts by the end of our 2 hour visit! She will review several of Brie's records further and personally contact some of Brie's Dr,'s herself for further discussion and will get back to me in regards to further suggestions, tests and a follow-up visit with her.
I have a good feeling about the "Dynamic Trio" that I have termed these 3 caring and concerned Dr.'s and I feel they will do EVERYTHING in their power to help us find answers or to contact the "Top Authorities" for help with this.
Kim