Autonomic stuff...

So we all know Charlie has autonomic problems. This is nothing new. Her doctors talk about it and refer to it. They don't dismiss it when I bring it up. However, they won't DIAGNOSE it. Why? I have no clue. It's not like they have to run tests to diagnose it. They keep passing it off to someone else. "Well, I don't really handle that type of stuff. Maybe her neurologist will talk to you about it." I've talked to like 5 doctors about it and they all just keep passing it off. WHO diagnoses this crap!? It's not like she needs immediate treatment. Her oxycodone and klonipin have it pretty much under control at this point, at least so it's not negatively affecting her quality of life. She experiences "episodes" nearly every day, but they aren't too bad usually. So why do I want a diagnosis? So when I try to get answers about OTHER stuff I don't have to talk about it in detail for a half hour before getting to my point. If they can see she has an autonomic disorder in her chart, can see her symptoms there, I don't have to explain it all to them. I think her GI stuff is closely related and it would be helpful to have doctors looking at the WHOLE PICTURE. I'm partially writing this blog post just so I can organize my thoughts and pics so maybe one day I can just print out the whole damn thing, hand it to a doctor and say "Diagnose her already for crying out loud!"

So this is the first time I noticed very odd coloring in this manner. It's like someone has drawn on her face. See the definite line right under her chin? Yeah, weird.

And it happened again, just a small line down her cheek:

And again, this time more severe:

This is "mottling" she's been experiences several times a week for the past year and a half, maybe more. She usually experiences it in times of stress and/or pain:

Odd spots that crop up all over her body, in the oddest places. Not pressure spots that we can tell. They come in clusters. She never has just one. When one pops up, you know she'll have 5 more by the next day. They last about a week. I'm not positive they are autonomic, but it's probable I think:

Her nurses chart them and they can't find any physical reason she would have them. Sometimes they are very small spots the size of a dime. Sometimes they are much bigger.

Other issues: Obviously there's the convulsions that aren't seizures. I've discussed this with several doctors and it's likely they are autonomic crises. She sweats profusely for seemingly no reason, usually accompanied by pain, mottling of her skin, and high heartrate. She overheats VERY easily. She also has difficulty keeping her temp up, but not bad as the overheating thing. Her heartrate goes wonky. Not as bad now than before we got her on meds, but it can still go super high when she's stressed. Over 200 at times. I'm sure there's more but I'm blanking. It'll come to me later. LOL

So if any of you know how it works with the doctors PLEASE let me know. I want this IN HER CHART!


Chilling on the floor after her nap. Since she was on the floor and I was in the chair, I had my foot down where she could see it and I kept "waving" it at her, and she would wave back. LOL Then I made it "talk" like a puppet and she thought that was great fun.

Her nurse made her some slippers out of fuzzy yarn. She looks like part muppet doesn't she? LOL She loves helping her nurse knit. She holds the ball of yarn while her nurse knits and gets to feel all the different textures.

And Charlie gives kisses now! When you ask her for a kiss she kind of flings her head at you. LOL She'll do it with stuffed animals too. Her nurse got a good video of it so if we can get it to go through my email, I'll post it here.