Friday, October 18, 2013

Choosing to Medicate. Also? Words Hurt.

For as long as I can remember, the biggest challenge B has faced is his impulse control. Or, lack thereof. He'll just walk by someone or something, and need to hit or touch. He still runs out of buildings without me, and across busy streets and parking lots. The other day we momentarily lost him at an amusement park because he decided he wanted to go on a specific ride, and just took off running into the crowd. I have a scorch mark on my counter from when he wanted to see if a bottle cleaning brush would melt over a candle flame (while I was in the bathroom for 2 minutes, and he was four.)

In our meetings with neurologists and developmental peds, there has always been talk about medication, but until now it was never something I wanted to pursue. He wasn't really being affected by his own issues (feeling badly about himself, or doing poorly in school), so we went the therapy route, instead. We talked about strategies, and implemented tons of sensory input, in case that was the root of the problem. We figured as he got older, he would naturally mature out of some behaviors. Also, because B is a small kid, having him take medication known for zapping people's appetites wasn't something we wanted to do. The child barely eats as it is. 

But, since his seizures began, things have gotten a lot worse. He's like a pinball. That's the best way I can describe the change in behavior. He is unable to regulate at all, and has started getting in trouble at school. A couple days ago we were at McDonald's, and B walked by a little kid and bopped a toy out of his hand. He didn't even seem to notice he did it, and immediately gave the toy back. That wasn't good enough for the child's mother, though, who laid into B, telling him he was a bully, and why would he be so mean to her son? 

B just stood there, like a deer in headlights. I could see the tears welling up in his eyes, and the red shade of embarrassment creeping over his face. It was all I could do not to start screaming back at this woman, but I knew it would get me nowhere (sometimes you can just tell when it's not worth it to even attempt a conversation), so we gathered our things and left. 

The look on B's face when this happened made me realize we need to try something else. I refuse to allow his self-esteem to take a blow, because the electrical activity in his brain is making him more impulsive. I refuse to allow his school experience to go downhill. I refuse to allow people to judge him as a bully, or bad kid. I never again want to see that look of sadness and shame on my child's face.

The fact is, we aren't new to medications. K has been on a few, trying to mitigate her constant anxiety, so it isn't like we are against them. We have always tried other things before turning to meds, but some things just can't be helped any other way. B has ADHD tendencies, anyway, and the onset of his seizures really made them worse. We were hoping once his seizure med built up in his system, some of the side effects of his seizures would ease up, but that hasn't happened. I've also learned recently that a lot of kids with Epilepsy display the same type of behaviors as B, and medication can really help. 

So today we are meeting with the developmental ped, and asking for a prescription. I once had a doctor tell me that you should never medicate your child unless their issues are affecting them. Not if they are affecting you as a parent. Not if they are affecting a teacher. Only if they are affecting the child, which up until this point they weren't. I have really lived by those words, and feel we've gotten to the point where B is being affected, and where he's starting to feel bad about himself. 

So here we are. 

Sure, there's a part of me that wishes we could find a different way to help B, but we've tried everything else. And if this truly is being made worse by the seizure activity in his brain, then all the OT in the world won't make a difference. B doesn't deserve to be screamed at, and called a bully. He doesn't deserve to get in trouble at school because he can't control his body. He doesn't deserve for his seizures to make things worse. He deserves to be seen as the awesome kid he is, and hopefully with a little help, that will happen. 

That's a great kid, right there. 


  1. I read this yesterday and tried to comment then (stupid phone). I really really sympathize with you on this one, Jen. After our last round of seizure activity and moving to depakote, Little Miss's impulsive behaviors were off the charts. I'm talking violent aggression, running away, inability-to-keep-her-hands-off-ANYTHING kind of stuff. Frankly, I blame the depakote. I know, I know... all the doctors and Dr. Google tell me that depakote is a stabilizer, but add that stuff to Little Miss and... I don't even have words. Unfortunately (and fortunately), the depakote has kept her seizure free for almost 7 months now. We did add a non-stimulant in to help balance things, but even with that, the little girl I have now is not the same as the kiddo I had pre-depakote.

    The only thing I can say from our experience is that balancing seizure medication SUCKS. I hope that you find the right combination for B.

    1. I am not even sure if I can blame the depakote, because literally this all started right after seizure #1. He came out of that beyond, beyond, beyond hyper, and just stayed way up there. And, yeah, I haven't seen any "good" side effects from the depakote, either...ha. Of course now we are waiting to hear if we can even try ADHD meds, bc I didn't realize they lowered the seizure threshold, so our dev ped has to check with neuro. We did try a non-stimulant one with K, but it made her rage, so I am nervous about trying it with Ben. We might just have to deal with it, and by "us", I mean "school" ;)

  2. If some kid just bopped a toy out of YOUR toddler's hand, maybe you'd be upset? If a kid yelled near your sensory sensitive kiddo, maybe it'd be upsetting? I'd be annoyed if a kid bopped my 18 month old and would not want to "productively engage" the mommy of the big kid who upset mine!

    1. Seriously? Actually, I wouldn't be upset, and I don't get upset. I don't think it's the end of the world is someone upsets either kid. I don't ever, EVER, scream at a stranger's child if they grab a toy, bump into them, or anything else. I would NEVER call a 7yo a bully, and it makes me sad you think that's totally acceptable. Our reactions shape our children, and I don't think it's OK to teach our kids to act that way. That yelling at someone for a small indiscretion is alright. That making someone feel badly because of a tiny misstep is at all appropriate. If a kid "bopping" a toy from your child's hand causes you to feel that much rage, that's a problem.

    2. You read this whole blog and THIS is your reaction? I really hope that you don't have to walk down our path, and wonder if people will judge your kid on their actions every minute of every day. I am sad for you.

    3. Having been in this exact position before (My Little Miss nabbed a toy from a much smaller child and the child's parent scolded her), I'd like to offer a little perspective, Alisha. Before you scold another person's child, take a second and take a deep breath. It is not your place to jump in and correct someone else's child -- that should be done by the parent. Sure, if the parent is absent or if the other child puts your son/daughter in imminent danger, jump in. But from reading the story, it's obvious that Jen was right there. As B's one and only mother, she deserves the opportunity to show her child the proper way to recover from his indiscretion. You would want the same for your child. Wouldn't you?

    4. It the kid "bopped" the toy out of another child's hand, took it, and ran off with it saying, "neener neener" then yes, I think that's not nice behavior. But it sounds like he gave it right back. It also seems like the mom was right there. The other mother, to me, never gave this mom a chance to apologize or even explain her son's actions.

      I am pretty sure I would never scream at a child, especially for this. Making another child cry? In this case? What does that accomplish? I just hope that mom just had a really rough day and snapped.

      Sometimes I think everyone needs to step back and take one big ass breath before saying something.

      Anyway, medication is so tricky. We deal with impulse control as well and may have to face this topic at some point down the road. When things like this hamper your child's ability to function successfully...perhaps.

    5. @onelocomom: I would never, ever scream at another person's child -- that's not what I did it happened to my girl. The other kid (maybe five? Six?) bopped the squishy from her hand and picked it up, I said "sweetheart, that's K's toy", he looked at me, looked like he was gonna walk away with it, his mom wandered over and gave him "the look" and he returned the toy, by which point my kid was crying. Crazy, her expectation of NOT having her toys taken away by big kids while standing three feet from Mommy at Hardee's. I picked up my unhappy kid, grabbed my take out order and headed out. Mom looked sad and sheepish, bopper looked confused, neither was inclined to apologize. Maybe the kid had invisible special needs. Maybe his mom was raised by wolves and enjoys raising him the same way.

      I don't expect perfection from elementary schoolers -- mine certainly are far from it! A bad day, grabby day, meh, it happens. Had my kid been the six year old bopper, I'd've told him to apologise, return the toy and had a little talk on Why You Can't Just Grab Stuff from Other Kids, Especially When They're Littler Than You on the way home.

      @Mom2LittleMiss: "He didn't even seem to notice he did it and immediately gave the toy back. But that wasn't good enough for the other child's mother".

      It doesn't sound like B was prompted to apologise or that a brief ("I'm so sorry, B gave it right back" apology) was offered to the other mom. Some tangible sign that B was being taught bopping toys from babies is, you know, bad would've helped. Yelling at someone else's kid? Flat-out wrong. Period.

      A seven-year old getting red in the face and feeling bad about his bad behavior? Very APPROPRIATE. B made a bad choice, possibly due to seizures. B is not a bad kid. Bad behavior is separate and distinct from a bad kid.

      My comment about yelling near a sensory sensitive kid? Wasn't yelling AT a sensory sensitive kid. It was merely that if your kid was sensory sensitive