A sassy, crafty mama bird from Los Angeles
raising a very sweet little girl with Autism
and a new baby boy in the Midwest... and other stuff, too.

Monday, November 8, 2010

Here it comes again...

Here it goes again. It's coming. I can tell. I can just tell. You probably couldn't, but I look at every little thing through a big magnifying glass. Because I'm that mom. 

Little Bird has been awesome lately. On freaking fire. It's been about 3 weeks of kickassness (not a real word, but certainly applies here). She's actually been the way she is after a good strong 2-week round of flagyl. But the last time we did that was back in August. I actually can't believe we've made it this long without slipping into that danger zone of needing another round. 

Something is just a little bit off. I can see it in the littlest things: she shouts "it's dinner time!" when its not; She's talking a lot, but it's not about things that are happening right now or it's just little two word phrases she's heard somewhere- totally out of context; she's sleeping less than usual or more than usual- but it's unusual; The biggest sign is the lack of attention. It's been really tough for her to maintain her focus for more than a few turns of back and forth. She's also a bit cranky, too. But, I haven't seen so much of the stimmy behavior: less fingers in the ears, no increase in flapping. Maybe she's coming down with something; she was kinda sneezy earlier today and extra cuddly this morning. I have had to give her laxatives three times in the last 8 days or so (yes, I keep a log of everything that goes into her and everything that comes out of her). Oh, about that... I think I can smell the bacterial overgrowth in her poop. See, I'm that kind of warrior mom- completely tuned in to every bit of my bird. 

The above paragraph should clue you in to just how crazy this process of figuring it all out can be. It's a constant conflict in my head. I wonder about this and that; I analyze this and that, then I argue with myself. A few days ago, Greg said, "you seem to be having a great day" and I said, "well, I think my bird has been doing great lately!" He goes, "you do?" "Yeah, don't you??" His answer, "yeah, I guess so." And that was it... I was off and running with my thoughts. Wait, isn't she? Am I imagining this? Am I just in a better place because of changes in my own {better living through} chemistry? Possibly, but nope, I'm right. She has been great lately. I'm grateful for my very open and connected relationship to ALL of her amazing therapists (I promise there are more therapist spotlights to come) because they can tell me when they think she's doing great and when things are a little off. Everyone agrees she's been "on fire". But, I think we are entering the phase where she may begin to go through a tough time. It's been a long time since our last round of flagyl and it's probably time for another go of it. So, Wednesday afternoon, I'll visit the compounding pharmacy that mixes it up for us without the additives her little body doesn't need, but with the strawberry flavor!

In the past, I've waited as long as I could before putting her on the flagyl, but it's already been a pretty long time AND I've learned that I don't need her to exhibit signs of discomfort and total dysregulation before I take action. Even though I've been doing this with her for a while now, so much of this disorder and the treatment of its symptoms feels new to me. I'm constantly questioning myself, her symptoms, and her doctors' ideas- or lack thereof. It's constant. You can see this inner turmoil that I go through, this struggle to make sense of something that is just so senseless. That's why I keep the log, because so much is just so day to day. Hour to hour. Minute to minute.


Cheryl D. said...

I hope it helps! Good luck!

Heather said...

Dani- do you have a format at all that you keep track of it all- or just a plain old notebook? I really need to get better at noting everything and need some motivation.

I'll keep my fingers crossed LB is just getting a little cold and nothing more- nothing blows more than a regression as we all know!

Big hugs to you and LB!

Jean said...

I really hope whatever is brewing passes her by. XXX

Lynn said...

I choose to go with the old "acting weird before making big breakthrough". We definitely think about this stuff way more than other people do. And by other people I mean our husbands.
Good luck with another Flagylpalooza...I'm trademarking that.

Dani G said...

Heather, just a plain old notebook!! I write down how long she slept, what she ate and what supplements she took. I always add whether she pooped and what it was like (I know!!).

tulpen said...

Too bad our instincts are usually right.

I'd see a look in Owen's eyes and know we were going to end up in the hospital within the week.

sherri said...

whatever flagyl is, I hope it helps. Maybe something is in the air. I was just saying last night how the kids had been doing great lately and the past two days have indicated we are taking a big turn for the worse. Regression before growth spurts is very common at our house.

jillsmo said...

I hate that feeling of impending doom. And "kickassness" is TOTALLY a word!

Chris P-M said...

Good luck with the Flagyl! I totally GET the constant kiddo-analyzing...it can be like a tape (okay, outdated reference but you get the idea) running over and over in your head.

We had a meeting with our ABA team yesterday and brought up similar concerns....Increase in sensory issues BECAUSE of meds? Sensory issues BECAUSE he's having a breakthrough? (BTW, I did bring up your "pus" analogy and totally grossed out the team. LOL!)

Ah yes, never a dull moment!

Brenda said...

Analyzing every. single. minute. That's us.

Laura @ The Things I Said I'd Never Do said...

It's insane how a mom's intuition is usually right but even then we question, bargain and beg for a correct or different answer.

I'm hoping that this is the 10% of the time that your gut is wrong and it's just a little cold that comes with the start of winter.

Cara said...

I love it that I'm not the only one who makes detailed notes about my kid! When we did a strict elimination diet and then re-introed a bunch of food I used a desk calendar (the big kind) up on the wall of my kitchen, complete with notes about BMs. I'm curious about the flagyl and am going to look more into it now.

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