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Old 06-04-2013, 02:46 AM #1
takashi takashi is offline
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Join Date: Jun 2013
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10 yr Member
takashi takashi is offline
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Join Date: Jun 2013
Posts: 1
10 yr Member
Default Central Pontine Myelinolysis

Hi everyone. This is my first post.

I'm posting on here because I'm looking for some advice and maybe just some hope. I'll try not to go too long, but I'll start at the beginning...

Back in late 2010, my mother-inlaw was diagnosed with CPM. I'm not exactly sure, but I think she was around 50 when it happened and up until the diagnosis, she lived a very healthy "normal" life. We're not 100% sure what caused her hyponatremia, but we're thinking it was a combination of a severe stomach flu plus poorly monitored use of blood pressure medication. Of course, what really caused the CPM was when we took her to the ER... the low sodium reported in her blood work was not properly identified, and a normal saline drip was given to her in the ER, of course causing her sodium levels to spike.

Immediately after that, it was almost as if she had locked-in syndrome... not able to move very much (barely able to move a finger or hand), or talk, or eat. It was very frightening; she would just look at us as we talked to her... the doctors said that we were lucky that she survived at all (probably due to her good health prior to the condition), but that the prognosis was not very good. After many many months of inpatient care, she actually began to make progress towards "recovery"... I put that in quotes because at that point, we didn't know what recovery meant. We just knew that she was making some progress.

The major milestones were walking and talking, although those things were laborious for her. But she was able to do those things within the first year. One major thing to note is that this happened while traveling to New Zealand... we're from the USA, so after that first year, we decided to take mom home. We thought that once we got her home, the great medical care in the US would drive even better results, but not so much...

After coming home, mom actually made some progress towards swallowing... we quickly realized that swallowing was going to be the single biggest thing for us. She was able to swallow pureed foods and small pills. This probably started a few months after arriving home... but now almost at the year 3 anniversary, she's regressed some. She's no longer swallowing any foods, and having a lot of trouble swallowing her saliva.

Her doctors and neurologists don't have any answers, and there doesn't seem to be a plan in place to help her towards making positive progress again... I feel like they've given up, and didn't even really have much honest interest in helping her in the first place. She's had two neurologists while back in the states, both of which don't seem to have any actual plans... they don't seem to know why she's regressed, but think it's more psychological than physical. Apparently even her speech therapist has given up.

Anyhow, I'm worried that she's suffering from depression... she never wants to talk, or see her friends. She has very few interests, and spends most of her time in doors. During the day, she does a lot of simple puzzles or reads the newspaper or watches TV... Plus, she never wants to talk about "it".

I know that I've written a lot of stuff here, but no specific questions... I guess I'm just hoping that someone reads through this and has some insightful or helpful words on what to do... perhaps some suggestions.

Thanks
Greg
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