Wednesday, April 7, 2010

Tough Decisions I Shouldn't Have to Make

On a weekly basis my thoughts fluctuate between having hope for Taz's future and feeling the opposite, hopeless. Well, today I'm feeling utterly hopeless.

Taz has been on risperdal (3x day), seroquel (12mg at night for sleep, the only thing that keeps the night terrors away), and depakote (2x day). For those who don't know, risperdal and seroquel are anti-psychotics and depakote is a mood stabilizer. It's pretty typical that someone with bipolar is on anywhere between 2-5 different types of medication, usually a combination of mood stabilizers, anti-psychotics. BUT, every medication works differently for every person. Which is what makes medicating children VERY tricky. Like I've said before, it's a guessing game.

For us, the difficulty is exacerbated by Taz's age. Our pdoc (or psychiatrist) is very experienced in working with young children and strikes a good balance between being aggressive to treat the illness but conservative in dealing with medication and Taz's age.

We had an appointment on Monday morning to check in about the med combo he's on now.

Since Taz has started the depakote, more than a month ago, he has been eating NON-STOP. And I don't mean snacking here and there on high carb foods. I mean shoving food into his mouth like he's been starved his whole life, then asking for more before he's done chewing. He's been eating two, sometimes even three, of each meal. So, 3 breakfasts, 3 lunches, and 3 dinners. Plus snacks in between. And the problem is getting progressively worse.

Even though Taz is very active and skinny, and as of right now he's not gaining tons of weight, I'm still concerned about this side effect.

Pdoc didn't think it was any big deal unless he is gaining huge amounts of weight. But why would I want to wait that long? Maybe it's just not a big deal in the grand scheme of things? Maybe he's seen worse side-effects and I'm just being a wuss? I don't know. I'm new at this.

Anyway, I've been depressed, discouraged, and feeling hopeless all day because we are down to three options and one very big realization.

The options:

1) Keep everything the same and deal with the eating problem in other ways

2) Taper down the risperdal to see if it helps

3) Take him off the depakote and don't replace it

And the big realization is...(dum dum dum)....this is as good as it's gonna get, at least for a couple years (when he's old enough to try another mood stabilizer).


I think I'm still naive about all of this. I mean, I've never raised a mentally ill child before. How am I supposed to know what to expect? I put all my hope in that medication would make him "normal". Now don't give me any BS about there being no such thing as normal. You know what I mean!

Even when Taz is stable, or having a good day, there is still "stuff" there. Anxiety, fear, short attention span, social delays, the list goes on. I would love, not for my sake but for his, if we could get just a few hours a day of normalcy.

So I put all my hope in medication. And it's working, to the minimal effect. But when we are late with the risperdal, Taz falls apart. If we skip a depakote dose, Taz falls apart. So, what choice do we have? We have to keep him on all three. It's what's holding him together (although he's still very fragile) enough to get through the day.

I guess I can figure the medication is the glue that's holding all the bipolar pieces of him together. He still might wobble here and there. He's fragile enough that even a little bit of shaking will knock him over. But when the ground is secure, it's the glue that helps him stand strong.

And I think it sucks that we have to choose between side effects of the drugs and side effects of not being drugged. That's the tough decision no one should have to make.

So we chose side effects of drugs. We made a small basket of low calorie snacks (rice cakes, raisins, etc) that Taz can have access to anytime. But those are the only things he's allowed to eat between meals. I'm hoping it's worth it.

What did you choose for your kids?


  1. No way around it: these are shitty decisions to make. The drugs are dangerous, the illness is dangerous, and everyone we meet has an opinion! Gah!

    Like you, we're extremely blessed with a pediatric psychiatrist who is very cautious. We medicate Carter and I feel like I live on a tightrope, trying constantly to get the best possible symptom control with the least possible medicine. I'm damn grateful that Carter is "only" on 3 meds right now. Last fall, he was on 5 plus one prn.

    Hang in there. Oh, wait, I forgot: you know when people say to us, "Oh, but there's no such thing as normal!"? That's minimizing and people do it to make us feel better. But out kids aren't "weird" (or not JUST weird); our kids are suffering. When people say things like that to me, I don't let it go by, because there IS such a thing as normal. It's normal to learn to walk between 9 and 18 months. If your 20 month old doesn't walk, who are you helping by saying, "There's no such thing as normal."

    OK, back off my soapbox. I have a closet full of 'em! Anyway, hang in, and try not to worry too much about the eating yet. Some side effects ease off after a little while.

  2. My son started on meds when he was 9 and suicidal. It started with an SSRI, switched to a different one. Then added a small dose of risperdone to placate the teachers calling for adhd meds, which were counterindicated due to tics. The risperdone worked, but he hated taking so many pills and stopped without telling me (I know, i should have been on top of it). I made him go back on teh ssri but was ok skipping the tiny dose of risperdone . . . until we realized he was hallucinating! This hadnt happenned BEOFRE the risperidone . . . but every time we tried to drop it or, later, lower it . . .hallucinations. We added some abilify and were able to lower the risperdone slightly, in order to combat his weight - he'd gained 1.5 lb/month for 2 years.

    He's . . . stable. being out of school is better and we've lowered ssri and abilify slightly. But no, he will never be 'normal.' He's a lot happier.

    My 17 yo was recently dx'd. She cant handle any meds. She's had awful reactions to 2 ssri's and a mood stabalizer. No one is ready to push her in to trying an atypical. After the last med effect, she seems to have fibromyalgia too.

    Future? Trying not to think about it. Now? I hate the meds. My son is so much happier on them. I wish something could work for my daughter. I wish they could be functional without interventions. I wish i still believed in happy endings.

    sorry . . . been a very hard month/day.

  3. Ugh, I know how you feel. My daughter has been on 3 meds, which was bad enough but when a 4th was added, I hated it. Somehow the #4 really hit me. I was like, this better make her meter spike to 10 or it isn't worth it. It turned out to make her super- manic for several days and I d/c'd it for that reason. Now, I feel like, she is taking all these powerful chemicals to affect her brain and this is all the result we are getting? Is it really worth it? My perspective only, of course.
    Will the hunger subside as a side effect of Depakote? Or is it permanent?

  4. My son had been on depakote in the past - and I don't remember that side effect. Maybe it's the combination? He was also on risperdal - which worked great for a while until he developed tardive dyskinesia... Oh, how I could on & on about side effects! My son has been on nearly every psychiatric med there is available. (no, I'm not exaggerating)... He's finally on a combination now that seems to be okay. One his meds - Clozapine, gives him an appetite like you describe! He will ask for seconds with food still in his mouth! NOTHING seems to fill him up! He has also gained about 45 pounds since starting it. - But, you said Taz isn't gaining weight, so maybe just wait & see how it goes, especially if it seems to be helping him. His appetite may settle down a bit...
    Deciding between side effects of drugs or the side effects of NOT being medicated is a tough choice. There are MANY people quick to give their opinion on that subject - but no one knows your son better than you. Just use your 'mother's instinct' and let that be your deciding factor...

    Take care,