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Friday, February 26, 2010

Clonidine

We started Aves on Clonidine last week. So she has been on it now 8 days. Today will be nine but she takes it at night so today doesn't count yet. We wanted to try it for her aggression (knocking Nolan over, grabbing his face, hitting pushing etc) b/c most of the time it seemed she was doing it involuntarily. Also, one of the side effects of it is drowsiness, so she takes it at night and it helps her to get to sleep. she has been staying asleep much better too!
So its much calmer here now. I dont have to be running in to see why Nolan is crying as much as I was. She can walk by him and doesnt seem to have the urge to hit him or push him. YAY. I have been praising this as I see it by telling her I like the way she is keeping her hands to herself. Her teacher said that she has been swatting a little less in school too-although she did pinch one of the aides pretty hard the other day. Who knows where that came from! Apparently she got her good! Her teacher also told me that her hand movements seemed to be more pronounced though. This I do not want! I know it shouldnt (b/c she cannot help it) but sometimes just the sound of it drives me up the wall! (where does that saying come from? what a weird thing to say, I will have to look that up!) So, I was thinking about maybe bracing one of her arms? What do you Rett mommies think? I want to see if it makes her feel better-obviously if it makes her more agitated we wont continue but I think it might make things better for both of us! I need to hear your stories on this! Chime in!
Well Nolan is up from his nap-back to work for me!

6 comments:

Owen's Mom said...

Glad she's doing better! I have to say, I LOVE that photo of them climbing.. Sooo cute!

The MacDonald Family said...

Annie hand mouths like crazy. We tried everything and then finally got arm braces (immobilizers) so she couldn't bend her elbow to get her hand to her mouth. She seemed so relieved when we put them on - she didn't want to be chewing on her hands but couldn't help it. I'm glad we got them, we've been using them ever since. Good luck!

Erica said...

Bridget-thank you!! i am going to try just doing the one arm she uses to slap her other arm (she slaps her right wrist with her left hand)-do you order yours from armbraces.com or somewhere else? Averys hand movements were to her mouth at the beginning-before we knew about rett. looking back though it is so obvious. she seemed to stop and then started with the hand slapping and tapping everything she is near. I hope it makes her feel better like they do for Annie!

Dominique said...

Cata doesn't do too much hand mouthing, more just midline hitting her hands together. We have used 1 arm brace to give her better control of her other hand, but otherwise haven't braced her. One of my big concerns with both arms being braced is if she fell. She usually can brace a fall with her arms, but I would worry since she falls quite a bit about not being able to do that. I looks like Avery is more steady than Cata so that may be a nonissue. Keep us posted on how it goes if you try it!

Colleen said...

I got some wetsuit material from a local surf shop and got some stick on velcro to fasten them. Claire wore the cuffs over the top half of her elbow. So they made it a little more hard to bend but she could still use her hands (at the time she could still feed herself). ANyway, the deep pressure seemed to help her be more aware of where her arms were. After using them for a while we found that she had a new pattern and she didn't need them anymore. They did help her to focus. If I find any of the scrap material I will bring it to the study in March. So glad that she is resting better, that goes a long way for everyone!

Ann Marie said...

I'm glad the Clonodine seems to be working. Increased hand movements are never what you want to hear, but maybe it will return to normal when she adjusts to the meds? We use a bennik brace for Abby sometimes. When she needs it, we brace her non-dominant hand to help her isolate her other hand. If she is very mouthy, we use both braces, as they allow her elbows to bend, just not so far that she can get them to her mouth.