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URL:  https://boards.fool.com/thank-you-it39s-appreciated-small-update-34105764.aspx

Subject:  Re: Things that are awful Date:  1/11/2019  5:25 PM
Author:  impolite Number:  40076 of 40283

Thank you, it's appreciated. :)

Small update: they believe they've narrowed it down to hashimoto's encephalopathy with no appreciable thyroid involvement.

This is rare, he's not in the "most likely" age group, and it's rarer still in men.

Unfortunately this really doesn't help a whole lot, since we've already run through two treatment protocols (steroids and the IVIG), but does explain why the symptoms that were most terrifying - the manic-like episodes that required hospitalization 3 times - have not recurred since we the IVIG was administered.

On the downside of things, his kidneys are now being watched. They are in the low range of normal after dropping from perfectly fine, as a side effect of the infusions is kidney function diminishing (usually temporarily, but possibly long term).

Still in the hospital. Did you know there are mobile notaries?! What a neat thing! We now have signed Durable health and financial POAs because a very lovely young lady offers to travel for notarizations.

Lots of paperwork to come. My biggest hurdle right now is not being able to be there 24/7, and being supremely frustrated with how few questions my mom asks when a doctor is in the room. We get these little tidbits of information, so Little Sis and I strategize and when one of us is there, we usually have a nurse check all the notes from a list of questions WE have, then have them put them in the notes to be answered next time if there is no answer there. Plus we send each other pictures of orders that hit for blood work, the boards that shows status, etc.

So we are trying to manage our expectations. She's not handling like we would, but we cannot be there full time, she's the person he's named (even before the POA, on all paperwork) as who is in charge of medical decisions, and there's no medical neglect. This is just personality clash. But GAH.

{And no, she won't record tconi, we asked. DOUBLE GAH}

impolite
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