St. Louis

At the end of February, we took Elizabeth to St. Louis to see a doctor at Washington University to be evaluated for Primary Ciliary Dyskinesia (PCD). My Mom and I took Miles too and braved the Missouri winter to see if we could get any definite answers about Elizabeth's "lung issues" as we seem to call them. We were gone for 3 days, 2 days travelling and one day at the hospital. She had multiple tests and at the end of it all, she Probably has PCD but we are waiting for a biopsy result that will probably take 4 months, to come back and even then it might not have contained enough nose cilia and might not show anything.

So, where does that leave us?

We are still doing the same thing - which is fine - really! We have been treating Elizabeth as if she has PCD since January of 2004 when we started The Vest! So, we know she has asthma (diagnosed in April 2004) and we really think that she has PCD. So, we treat her for both and watch her closely.

So, what will a definite diagnosis get us?

Well, access to the latest and greatest treatments and care - oh yeah - we have this already, Wash U let her in the study since her Nasal NO was so low (a primary indicator for PCD). Maybe a sense that we are not looney for thinking that she is sick all the time and there is something wrong with us for being paranoid parents (oh yeah we know we are looney anyway).

Hope you're all doing well!