Despite my plan to be open, I realize that I need to be a bit guarded. My children are the only ones with their particular combination of diagnoses. It would be all too easy to identify us, if someone were looking for our information online. That noted, I shall begin.
The first visit to the doctor did not go as planned. I had expected that a muscle biopsy would be ordered, and hoped that it might be within a week or so. The neurologist had told me that's what to expect. Instead, they did not order the biopsy. She told us to see another doctor to get clearance for the biopsy and come back in three months. If they don't give us clearance, then they won't have the biopsy. She also told us that I cannot choose the surgeon or the facility where we have this done.
We don't have a diagnosis and may never have a diagnosis. Without a diagnosis, she can't give us a prognosis. If we never have one, then they look at the clinical presentation of symptoms, including the severity and the onset, to suggest survivability. When she was examining my children, she was not accounting for their other diagnoses and how that might affect their score. I did not have an opportunity to ask questions, and we were there for three hours. I did not have the opportunity to volunteer information that I think may have been vital. Instead, it was her asking all the question in a third-degree fashion. This was unlike all other specialists we've seen, and there are 21 others. I was surprised that it wasn't about establishing a relationship. It felt as if we were there to serve their purposes, as if they were research subjects and not patients. I felt like it was -such a hassle and a burden on them administratively - to have two patients who doubled their charting. I felt no sympathy whatsoever to the fact that I have two children with different serious, disabling diagnoses who now are adding in a second, serious and potentially fatal, diagnosis.
The biopsy may give us a diagnosis, but it may not. If not, then we might undergo genetic testing - we, meaning all of us. There is no indication of which tests, especially since we've already done comprehensive testing at the geneticist. Those tests did not find anything for one child, but did find my youngest son's primary diagnosis. Therefore, we could go through months or years of testing without a conclusion.
That's enough for this post. The subsequent days were an emotion turmoil. I could not post during this time. I needed to process emotionally the experience. Plus, I had important questions that I had to ask of other physicians. After a week, I was able to come to a place of calm acceptance. I'll post more on how I got there. The situation is good, now even though the diagnostic situation has changed. The other physicians on the team are involved with their own opinions, and I'll post more on that. It's been a two week journey, that I'm compelled to share.
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