Reply to Help psych me up to reprise medical warrior mom role (Sorry--long)

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[quote=Anonymous][quote=Anonymous][quote=Anonymous]Unfortunately this is a common pattern with a rare/complex medical condition -- it sprouts subconditions and sub-categories of conditions.  A diagnosis isn't static and neither is a medical condition.[/quote]

OP here. For years all we wanted was a diagnosis.  And then we got one, we realized that this was not nirvana.  Another long period of trying this and that to get a treatment that restored something like a normal life.  And you are right: now we are on stage 3.  I don't see the main diagnoses changing--they are pretty much all lifelong chronic disorders--but you are right about the sprouting.  Didn't anticipate that--our happy little bubble burst this week with this new realization.

As to advocacy--very important and DD has become much better at it the more she sees me do it.  She even once disputed what a doctor was telling her by pointing out test results that didn't support his view.  A proud moment.  I am still with her for the two more complex disorders and definitely for the long haul schlepping.  She hasn't got a license yet owing to epilepsy, one of the more common disorders she has.[/quote]

Epilepsy is an illness that has remissions and periods of sprouting new facets.  It's frustrating that way.  There may be periods of her life where she virtually forgets about it and periods of her life where it is a foremost concern.  It intersects with many other diagnoses.  I know since being diagnosed with epilepsy at a young age I have had to also be followed for Dupuytren's Contracture in my hand; for depression and for other ailments that are adjuncts to epilepsy.[/quote]

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