So, it has been just over 4 months since we took Elizabeth to Washington University in St. Louis to participate in a Primary Ciliary Dyskinesia study and the results are in!
We officially had "not enough cells on the sample to look at", which isn't surprising because she wasn't an eager participant in the "nasal scrape".
She technically wasn't diagnosed with PCD before we got there nor when we left, and not even now that the final test result has come back. We left with a Probable PCD diagnosis - which is more than what we had when we went to WashU.
All in all, we are still doing the same thing - treating her as if she has PCD. Breathing treatments and meds are all the same. Even if she was technically diagnosed, we would still be doing the same thing. We feel good about where we are, with the doctors we have and the plan we are following. If she has to have another some nasal polyps removed or another bronchoscopy or something else fun like that - we will try again while she is sedated.
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