Re: update 10/10

[Guest guest]

Glad to hear things are starting to (slowly) get back

to 'normal'... shes been on quite a ride!

I take high doses of florinef for my blood pressure, and while i had

a hard time convincing myself to start taking it 1.5 years ago, it

has honestly given me my life back... dont expect anything right

away, it took almost a month for me to find the right dose, and

actually see a difference, but in the end it was WELL worth it.

(at the most i took .4mg a day, and my bp was still only 85/40, but

thats better than the 60/20 it was without it!)

I hope you all continue to see improvement and that shes feeling

back to herself soon!!

Keely

>

> Hello, I just wanted to update everyone on 's progress.

We're

> still at NEMC, having watched the same elmo videos over and over

for

> 15 days now. is alert and moving around, babbling,

crawling

> a tiny bit, and complaining when her movies finish. We've seen

some

> signs return, such as " all done " when she didn't want to play with

> the OT. She's collected a few new diagnoses, including metabolic

> encephalopathy, neurogenic bladder, and retinitis pigmentosa. Now

> what we're waiting for is for her to tolerate tiny jtube feeds.

> Right now she's getting 5cc/hr of pedialyte and she's acting like

> it's a mixture of tequila and ipecac. Her autonomic symptoms ar

> completely off the wall and she's getting tons of IV fluid and

> sodium. We may try florinef to keep her BP up. She'll be having

> manometry testing on Tues to try octreotide to get her to tolerate

> tiny feeds.

> Thanks for thinking about us. is stable, making tiny

gains,

> and hopefully will be able to go home at the end of the week.

>

> Heidi, 's Mom, 2 years, mito myopathy, TPN dependent,

> dysautonomia, dystonia, seizures, RTA, etc.

>

> Darla, , Suzanne, Ann, I'd love to hear from you. My email

on

> the laptop is mom2colemankidz3@a...