Tuesday, July 26, 2011

Out of no where

Sleep last night was pretty much identical to the night before (and the night before that). I woke up around 4am to find Reagan wide awake, covers kicked off, and smiling away! She did go back to sleep and then slept til right before 9am. She's been a sweet girl again today. She has been holding her pee though, so each of the three diapers she's had today have been super soakers (one getting the nurse and the other getting Daddy). She did have a weird episode this morning though. Right before her OT was supposed to show up, she had two random throw ups! No warning, nothing. They just came out of no where. After the first she was pretty sweaty and you could just tell she didn't feel well. About 15min later, she had another one and then fell asleep for a little while. I drained her tummy and got a decent amount of fluid out of it (certainly more than I would expect on a "good" day). When she woke, she seemed fine and then never did it again all day! Weird. This afternoon she had PT (which she did really well for) and then an appt with her PM&R doctor (physical medicine and rehabilitation). She's usually the one that writes the prescriptions for her AFOs (leg braces), arm restraints, etc. I mentioned that the custom hand covers just weren't working to protect her hands on bad days and I brought up the idea of a helmet. She didn't like the sound of that, but I told her how concerned we were that at some point Reagan may actually do irreparable damage to her hands!! I told her that we were only going to put this on her on her super bad days...obviously not something for every day use. I also spoke with her about Reagan's "bad" days and how frustrated we were that no one had been able to help us get a handle on this yet! She immediately knew exactly what was going on (that Reagan is having something called Autonomic Storms) and she also knew exactly what medications to try to treat it! She suggested a daily dose of clonidine (we're going to try the pills first, but may need to switch to the patch) and then daily diazepam. We've never tried Diazepam with Reagan (although we've carried it in her diaper bag ever since she started having seizures...it's a rescue seizure med). She said the two of those work very well together in controlling Autonomic storms. It's just so crazy that of all doctors to help us with this, that she would be the one that would immediately know exactly what we were talking about. She even said it's like fight or flight...and I said, "YES that's exactly what it is!!!" So nice for someone to not only care but to have an idea on how to help!!! So we're going to start slow with a consistent pm dose of clonidine and then work up to twice or three times a day. Reagan's got an appt with cardiology next week (for her extremely high heartrate) so we're going to talk with them about all of this then. Hopefully everyone will be in agreement that this course of treatment is the way to go (for both the Autonomic Storms and high heartrate). And hopefully it will work!!! How awesome would that be!?!?!? Oh my gosh! It would be such a HUGE answer to prayers!!! Tonight all has been good except for a couple random meltdowns by our girl! One was when her Daddy picked her up (not that surprising) but the second came out of no where...the only thing I can think of is that she didn't like Mike and I talking amongst ourselves. Who knows! Hopefully she hangs in there and has at least a few more good days!!! She deserves them! Please keep her in your prayers!!

5 comments:

Jamie - AZ said...

OK how awesome is this news!! What a relief!!! After all the talking, explaining and begging of the Dr.s to help, you finally get some validation!! I am sure you were smiling ear to ear with this surprise. Now prayers that the new meds will help and everybody agrees with the idea. I hope the good days stay and stay and you all get sleep. Hugs to the sweet princess. And no more throw ups Reagan!! :)

Zoey's mom, Heather said...

An answer to prayers.How incredible that would be. Or our mind set has to be: How wonderful it WILL be.

Love to you and kisses to Reagan.

Kristy McCall said...

How exciting!I will be praying that this will give her (and her parents) the relief she needs!

Clarissa said...

I think I told you before that Abigail takes both clonidine and diazepam! Hopefully it helps Reagan like it has helped Abi!
For Abigail is works best for her to take a dose of clonidine at bedtime along with melatonin. Then she takes three doses of diazepam throughout the day (6am, 12noon, and 6pm). It has really helped to cut down on her really bad times. She was going days at a time without sleep, screaming, sweating, clammy skin, eyes glazed over, "out of it", over heating, biting herself (breaking the skin and drawing blood all of the time!)... it was horrible! She is a lot better in all of those areas with clonidine and diazepam.
Just wish we could get a hold on the daily vomiting!!
Many prayers that things will get better for you all!

Debbie said...

Can't wait for you to get this going and see if it helps!

Hugs...