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ceee,
There's nothing more important than taking care of your family and I know you are doing all you can for your son.
It's hard to fathom that you still don't have a definitive diagnosis, much less a treatment you are confident is right for your son.
Having so few answers after this long is very unusual, but having more than one bone marrow biopsy in a year is not. Whenever bone marrow failure is suspected, what's going on in the bone marrow is one of the biggest clues to what is causing the symptoms. I lost count of the number of bone marrow biopsies my wife had the first year or two, but those observations of changes in her marrow led us to modify her diagnosis and treatment, and that paid off.
You don't always have to be able to name the disease or disease subtype if you somehow know what to do about it (the best treatment), but it's rare that you can determine the right treatment without first knowing what disease you are battling.
The key to knowing whether a medical test is warranted is to ask the doctor "how will the results affect treatment?" If the answer is that it won't affect treatment then the test may be unnecessary. It seems likely that a test required to assign or confirm a diagnosis will affect subsequent treatment, which is why you always start out with so many tests. Over time the question becomes "what new information will we get from another test and how will it help?" Subjecting a child to bone marrow biopsies is something we'd all like to avoid, but I'm not surprised to hear that your son has required a number of them.
For what purpose do they plan to give him the MRI?
One of the frustrations of bone marrow lab results is when they come up empty due to a lack of cells to examine. Without cells to study they can't learn much. Is that what happened to your son? If they found cells to study and didn't find anything wrong with them then that's good news, even if it doesn't help explain the symptoms. And if they found cells to study and claim (as before) that his bone marrow is "abnormal" then let's get specific; what's abnormal about it?
Your son's doctors may be perfectly competent but still don't have enough clues. If it was me I'd take the medical records to another center (a third one in your case) to ask for another opinion. Bringing the records avoids having to undergo more tests. Sometimes another doctor will see things differently, based on different patient experiences or areas of expertise, and will have another approach to suggest. When you are working with multiple doctors they should be talking to each other, and I hope that's what is taking place.
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