On a good day, parenting will test the integrity of your character. On a bad day, parenting will test your will to live. Parenting children with trauma histories will cause you to test the integrity of everything and everyone you thought you knew, for the rest of your life.
~J. Skrobisz

Sunday, August 22, 2010

The Illness, not the child

In the morning, we go back to the pdoc and discuss Sissy's lab work from her resperidal and renew our discussion about whether or not she should stay on that medication. I don't think I'll sleep much tonight because I'm anticipating a difficult conversation with her physician. Unless her liver enzymes show that Sissy's body can't process the medication, I'm going to find it very difficult to agree to a med change that will take at the bare minimum, 6 months to get her stable again. I have fighting words from all her teachers that are marveling at the progress she made this summer, progress I know is due in large part to the increase in her anti-psychotic medication.

Last month, after we left the pdoc's office, Sissy and I discussed the reasons for his concern which were mainly her weight gain and her withholding. Sissy cried, squirmed and said flat out, "I don't want to talk about this. It's scary." But I made her talk about it. Low and behold, she's made some personal progress in eliminating with some regularity (accidents in her pants notwithstanding - at least she was pooping!). We also took some time to review her size. According to Sissy, she hadn't noticed that she'd gained so much weight. So I decided to scroll through old photos and stumbled upon this one that brought tears to my eyes. (excuse the stupid time stamp on the photo)

This picture was taken two years ago, exactly one month before the doctor diagnosed her with bipolar disorder [1]. She looks so ill, her eyes sunken with dark circles, her body so lean and frail. It doesn't even look like my child. This was at the height of her unmedicated manic episodes, a full year before suicidal and homicidal ideations that landed her in RTC. At the time, I only knew that my daughter was not well, was uncontrollable, that we needed help. I had no clue just how ill she was. Looking at this picture now, I marvel that I didn't know.

Sissy and I talked until she gave me her dumb-bunny look [2], her facial cue that lets me know I've said one word too many and that her brain is shutting down. We both decided that for what it's worth, her current size, although slightly rounder than the average 10 year old girl, is way healthier than her chemo-kid photo. Even Sissy remarked that it didn't look like her, citing the marked difference in her face. So I took a picture of her currently for comparison.

I think you'll agree with me, she is much healthier now and I have the pictures to prove it. Really, it's going to be a hard sell for the pdoc to convince me that we need to take her off the resperidal. My child's illnesses and the medications she needs for them should not be determined solely by her weight gain and her psychosomatic toileting issues. As far as I'm concerned, this is the closest to "healthy" she's ever been in her entire life and that includes the 10 pounds she should lose.  It's certainly not worth the emotional trauma of six months of rages and crises while we titrate her onto another anti-psychotic.

If you don't see a post from me tomorrow, you'll know I didn't win the fight with the pdoc and I was too overwhelmed to blog about it.

[1]as for bipolar diagnoses: in children this age, most doctors are reluctant to put that label in a chart because it sticks with them for life even if the diagnosis is proven false later.  That said, Sissy has a genetic proclivity for the disorder and after 15 months of daily charting on moodchart dot org, it became clear to both me and her pdoc that she has a rapid cycling form of mania with only brief bouts of depression in addition to a possible schizoid affect

[2] the dumb-bunny look is our coined name for Sissy's and now I will pretend I'm mentally retarded expression.  Her tongue protrudes and lays lifeless on her bottom lip, her mouth open and her eyes rolled upward to the left, her head slightly tilted in that direction.  Sometimes she rocks.  Don't be fooled, she's hearing everything people say and is processing the information just fine in addition to strategizing ways in which she will get you to shut the *bleep* up and leave her the *bleep* alone.  Classic RADs stuff.  She just doesn't want to hear it, own it, accept it or deal with it.  It's always easier to pretend you're too gosh darn stupid to understand.


GB's Mom said...

Good luck tomorrow! You are right- the second picture shows a much healthier child. Hold your ground... you are in my prayers {{{{Hugs}}}}

Kristin said...

If it helps, my 10 year old is 93 lbs. She is on maintenance medicine for asthma, and she's always been a little chubby.

I'll take chubby over unhealthy any day of the week.

Your piece of mind is worth 10 lbs.

Lisa said...

Ah....this made me cry. My 15 yo dd was dx with bipolar a year ago. Until then her behaviors were all attributed to ADHD and meds were not working. She has gained about 15 lbs since going on Abilify BUT she's a new kid. I look back at the pics of her from around ages 5-12 and my heart breaks at how stick skinny she is and the dark circles under her eyes. Her motor was always on (manic) and she would randomly do things like hiss like a cat when I told her to do something. It was pure craziness to live with - and yet, the pdoc would always dismiss most of these strange things as just "kid stuff". I was even asked one time, "Can't you just let her be a kid for an hour every day?" as if I had any choice in the matter??? As if I had any say in how she responded to others. ADHD meds made her cranky and so irritable you could not even look at her without her bursting into tears and claiming that everyone was purposely picking on her. Yes, she would like to lose some weight (being a 15 yo girl will do that do you anyway), but I wouldn't take her off this med just for that. I actually think the med needs to be adjusted upward slightly because we're seeing some breakthrough behaviors randomly. I am going to go to the website you mentioned to chart her behaviors - what will they think of next??

It's like a miracle, isn't it? I know we aren't supposed to be looking for some magic pill to fix our kids. I know that doesn't really exist. Finding anything to help them act like regular kids is priceless though. I grieve every day over the loss of "normal" for my kids and I would do just about anything to help them achieve a regular, successful life.

I love the dumb bunny expression!! My 17 yo does that and for years it was hard to figure out whether she was faking to shut us up or was having a petit mal seizure :) She got new glasses and her dumb bunny look now resembles glaring. She gets called out by her sibs all the time about it (ie "Why are you glaring at me?") and she's constantly yelling "I AM NOT GLARING AT YOU" - nice, huh?

Good luck at the pdoc.

Mama Drama Times Two said...

Will you be bringing pics to the pdoc? Best of luck tomorrow.

Kerrie said...

What did you do for Sissy's year of birth on the mood website? It wouldn't take Princess's.

Integrity Singer said...

@ Lisa - yes, yes and more yes to all of what you wrote. So much of sissy's behaviors were just her mania. Oh, she's still a RAD kid, it's pretty obvious when she does RAD stuff that is unrelated to her mood disorder but being on the other side of the manic, it sure is clear that life with our challenged kids is anything other than "normal kid stuff!"

Ashley said...

I think Sissy looks great in that 2nd photo- I hate "fat bias", and I think it has no place in Mental Health, especially in pedes.

(Note: I am not meaning to say that Sissy is fat.)

Integrity Singer said...

@ashley - no worries! you're right, fat bias is irritating. As a big girl that has a healthy heart rate, blood pressure, cholesterol and a stable thyroid, I hate being judged by my size alone. Hello? I can swim half a mile in 30 minutes. That can't be all bad for a big girl!