I feel like we're striking out. Connor was seen once by an allergist who promptly said he was too complicated and referred us to an Infectious Disease specialist. We've been seen by that dr for several years now, with decent management that I'm satisfied "enough" with.
But Connor's Geneticist was not satisfied, and felt that Connor was too sick too often, and suspected a deeper underlying immune deficiency that needs better management, so he referred us to the Hematology/Oncology/Immunology clinic at a large, well-know, high-ranked, childrens hospital not too far from us (trying to avoid a UA violation here!
)
The appt went really well, I was impressed by the staff and the clinic and even the head dr (although I did feel that he had the attitude of "I see so many kids so much more sick than Connor", which kind of bugged me, because while that is certainly true, Connor still deserved his focus and attention...but anyway...) Then the lab results came in with some kind of concerning (to me anyway) results. I'm skilled enough with google and smart enough about medicine in general to interpret these tests such that I had lots of questions. The dr's response was basically that he was unconcerned and didn't need to see us again. I continued to pry for more answers to my questions (via phone calls to our nurse case manager) and the responses from the head dr are getting more and more curt (even the nurse is getting annoyed, at the end of my last phone call she said "wow, he really isn't giving much explanation, is he?"). I'm not a happy mama.
So I faxed the lab results to the Infectious Disease specialist that has been managing Connor for years, and he said he'll review them and we can talk about them. Maybe he can answer my questions.
But in the meantime...I'd be interested in any other respected Immunologist that might be willing to do a records review? Does anyone know of one?
But Connor's Geneticist was not satisfied, and felt that Connor was too sick too often, and suspected a deeper underlying immune deficiency that needs better management, so he referred us to the Hematology/Oncology/Immunology clinic at a large, well-know, high-ranked, childrens hospital not too far from us (trying to avoid a UA violation here!
)The appt went really well, I was impressed by the staff and the clinic and even the head dr (although I did feel that he had the attitude of "I see so many kids so much more sick than Connor", which kind of bugged me, because while that is certainly true, Connor still deserved his focus and attention...but anyway...) Then the lab results came in with some kind of concerning (to me anyway) results. I'm skilled enough with google and smart enough about medicine in general to interpret these tests such that I had lots of questions. The dr's response was basically that he was unconcerned and didn't need to see us again. I continued to pry for more answers to my questions (via phone calls to our nurse case manager) and the responses from the head dr are getting more and more curt (even the nurse is getting annoyed, at the end of my last phone call she said "wow, he really isn't giving much explanation, is he?"). I'm not a happy mama.
So I faxed the lab results to the Infectious Disease specialist that has been managing Connor for years, and he said he'll review them and we can talk about them. Maybe he can answer my questions.
But in the meantime...I'd be interested in any other respected Immunologist that might be willing to do a records review? Does anyone know of one?
