Aggressive behavior/violence, low impulse control

[KarenB]

The good news is that Jon has been seizure free for 6 months.

The bad news is that his violent behavior has recently (in the past month) come back with a vengeance. We're constantly getting slapped, pinched, scratched, and hair pulled. Constantly. It doesn't seem to be out of anger -- it's as if he can't control himself.

And it's getting to the point where we can't take him out in public or have him around other children. Yesterday we were walking down the sidewalk, and he was reaching out and slapping and scratching passersby. This goes on a lot. Last Saturday, we took him to this big indoor playground -- a giant ball pit with a big slide going down. He was having a great time -- laughing and giggling. But then he would pounce on some poor kid and pinch him/her. He'd be laughing while he did it.

I'm at my wits end. We had to keep him out of school last year because his health and seizures were so bad, and now he's healthy (physically and with seizures) except for acidosis caused by his Zonegran. But there's no way they're going to let him back into school if he's constantly (and I mean constantly) attacking other children and teachers. And I've reached my limit of patience and tolerance with this behavior. We've tried everything with regard to behavior control, and nothing is working!!

We've seen this behavior before -- when he was on certain meds (Trileptal, Diazepam, and Keppra). But usually he's very sweet and non-aggressive. But now he's only on Zonegran, and has been on it for about 9 months. After weaning the other meds, his behavior was fairly good for several months -- mild aggression, but mostly if he was bored or wasn't getting his way. But now he's become uncontrollable.

Have any of you other parents experienced problems like this? And what did you and your child's doctor do about it?

 

[Janus]

Wow, I feel for you. I have a now 11 year old and can remember the hard stages of his growing. How old is he now? Mine got easier by far. I really hope something turns up for you as a cause.

 

[KarenB]

Just got back from taking him to Neurologist. His CBC looked ok, and his electrolytes were back to normal (almost), so he's not in acidosis anymore.

His neurologist says he sometimes sees this in children with seizures -- when the seizures stop! He says psychosis is also common in children with developmental delay.

So, now Jon has been prescribed Abilify. I've been checking up on it online. I'm a little nervous, because apparently it can lower the seizure threshold in some patients. And it seems effective in treating rages in children, but Jonathan isn't having rages. He can be perfectly happy and smiling and giggling, all the while slapping or pinching. So...nervous about starting it because not wanting to see the seizures come back. But, we can't live with this violence either!

 

[jyearta]

KarenB I hate to read what you and your family are going through. I hope you get some answers/help soon.

sending prayers your way.

 

[CathyAnn31]

I'm sorry to hear about Jon, Karen. I don't know anything about Abilify but hopefully it will be just the thing that helps curb this new behavior.

 

[donnajane]

Hi Karen, My son has periods where he does this as well. He is usually the most caring little boy but when he gets into this state he can be hurting others and smiling, like he doesn't understand what he is doing is wrong. He has done this quite a few times to his older sister, she's 4 in October and it breaks my heart where she comes to me really upset and basically terrified of him. My mum got to see it first hand how terrified she was of him and she said it was so sad as I think before my mum thought I was over exaggerating his behaviour. His sister keeps asking why is he hurting me doesn't he like me. Its so hard for her to understand how a brother she usually plays with and has a great time can become like this and she often gets some really bad scratches and bruises as well. He also does this to his older brother and unfortunately he turns around and does it back so they both end up hurt.
Thankfully we haven't had a period like this for a week or so. Child care has also seen it on a couple of occasions and had to move him away from the other children, they say it is so out of character for him. But then his whole condition is a mystery. I have also been on the receiving end and worry how much he could hurt someone when he gets older if he is still doing this as the strength he has at 31months is already a lot.
I hope the medication works for Jon and doesn't affect his seizures.
Take Care.
Donna

 

[Janus]

When my so was younger ( now 11) at the hardest behavior times we sought professional help and the best tool we found from that is to continually shower them with love and let him know the behavior is wrong not his person. We found results after starting this. Just sayin' I feel for you both.

 

[KarenB]

Thanks Janus. Jonathan is 9 now. His behavior seems to be getting worse as he gets older. When he was in kindergarten, he was the best behaved little boy in his class -- never a hint of violence. The aggressive behavior started up when his seizures came back -- around age 6. It seems to be related to certain meds -- because when he's weaned off of them, the behavior gets much better.

It's hard to shower a kid with love, when you're getting scratched and slapped, but I hear what you're saying. It's also hard to use the usual behavior modification techniques when he seems to have no control over his actions. He knows it's wrong, but its as if he can't stop himself.

We're on day 3 of Abilify. It's made him a little sleepy and apathetic, but those effects are to be expected in first several days. I've noticed it seems to have affected his hand-eye coordination. The aggression seems slightly abated. We'll see how it goes -- it's a two week trial.

 

[Janus]

OMG! that is a ton of work! This can be a sign of early puberty hormones kicking in and that may effect how his meds change behavior. Please try checking in with the Doc. Does he have any answer to why he is acting that way? I mean Jon, can you ask him why he wants to do this?

 

[donnajane]

Janus I found it interesting reading what you wrote re hormones etc as when we saw our sons paed this week she said she feels his condition is settling a bit as his growth is settling more now he is 32 months and she showed us the increase in his head size, jumps not following what most kids do, appeared when he was having more of a "bad period" but also when the most growth would be happening. The rest of his body ie height and weight just increased as exprected. Belive he still has bad patches but nothing like before.
She said that she does wonder that even if his conditon settles that when he has large growth periods, especially around puberty he may be in for a "tough time". But as they still are trying to work out my little mans condition its still only a guess.
But when I read what you wrote just made me think of what she said.

Thanks for sharing.
Donna

 

[KarenB]

Janus -- you may be right about this being hormonally related. Jon began to show signs (pubic hair) of early puberty a year ago, even though he was only 8, and only weighed 45 pounds (still looks very babyish). At the time, we were suspecting a Hypothalamic Hamartoma, as he was also having gelastic seizures (the 3 earmarks of HH are early puberty, gelastic seizures, and violent behavior). However, he had another MRI, and it didn't show any tumor, so he apparently doesn't have that condition, or the tumor was too small to be seen.

He does have seizures that begin in the temporal lobes (usually right), and I've read that this is often associated with psychosis. However, I find it interesting that it also seems to be med related. Maybe the meds trigger an underlying psychotic condition??

As far as asking him...well, Jon is largely non-verbal. He only speaks about 10 to 20 words now (he regressed significantly in language, as well as other developmental areas when the seizures came back). I think some of the aggression may be because of frustration with not being able to communicate. But some of it doesn't seem related to frustration at all. For instance, when he's involved in active play with other kids and giggling and have a great time.

 

[Janus]

Wow, you are to be commended for staying the course here, my heart breaks when I read this thread sometimes. Is the abilify helping now? or is it still too early to tell. Is he eating a good diet? Just askin'

 

[Bernard]

Even kids without medical (or medication) issues go through periods where they need to learn how to deal with frustration / adversity without violence. So sorry to hear about your difficulties with Jon. My first thought on reading the OP was that it sounded like Kepprage, but he's not taking Keppra.

The violence issues might be medication related, but it wouldn't hurt to try teaching him how to make better decisions to solve problems. Impose consequences for bad decisions (take away a favored privilege or toy for a day for example). $.02

 

[KarenB]

The Abilify doesn't seem to be helping yet. It's been 5 days.

Jon is on the Ketogenic Diet for seizures. He doesn't eat any sugar, and few carbs. He eats lots of fresh veggies. All of his foods are organic, whole foods -- he doesn't get any processed foods. He's been on the diet for 2 1/2 years now. All of his levels are good (lipids, vitamins, etc.) except that we have to stay on top of metabolic acidosis caused by the Zonegran. (He just got tested for that, and all his electrolytes were ok). When he was only on the diet and NOT on any meds, he was not aggressive -- except for infrequent blips. Unfortunately, he started having seizures again so had to go back on meds.

Bernard, Jon was on Keppra in October 2012 through January 2013, and we saw a lot of violent behavior then. It also didn't help his seizures -- in fact, it seemed to make them worse. When he was weaned off, his aggressive behavior eased way off. But in the past 6 weeks, it has re-emerged.

The violence doesn't always seem to be related to frustration or anger. He just does it -- even when he's happy. We'll be walking through the mall, and he'll be skipping along, all happy and smiling, and slapping everybody he can reach. Same thing in the playground -- when he's having fun.

Behavior modification like taking away a toy or privilege or time out, etc. has no effect whatsoever. I did, however, set up a special "time out" room (with the idea that:
a) it may have something to do with sensory integration issues
b) sometimes I need a break from getting scratched, hit, and pinched

It's a little room with a window-- (so I can keep an eye on him from the next room). I put an inflatable swimming pool in there, and filled it up with balls, and he can go in there and play in his ball pit. It's not meant as a punishment -- just a place for him to go "decompress" and for me to get a break. He has to stay in there for 15 or 20 minutes, and he's usually a lot calmer when he comes out. But, that's only works when the bad behavior is at home.

 

[jejrrlq]

This is exactly why I decided to join this forum. My 6yo son has Partial complex seizures diagnosed june of last year. He has been on trileptal and it has become SO clear that this no impulse control, anger, aggression, and laughing while doing it is due to this medication. He is struggling in school so much he's spending part of almost every day in ISS. It's breaking my heart and finally the neurologist believed me after our regular Ped witnessed his behavior. We are now starting on zonegrin and tapering the trileptal. This behavior is so scary and sad. He has been really down on himself too, saying he should just die. I wish there was an easy answer to this.

 

[KarenB]

Yes, we did find that Jon had what's called a "paradoxical" reaction to Trileptal -- it's used to treat bipolar kids, but in regular kids, it can actually cause bipolar symptoms (our neurologist informed us of this AFTER he almost got kicked out of school). And yes, the symptoms eased after weaning the Trileptal.

One thing you need to do to protect your son at school is request a Functional Behavior Assessment (this is required by law) -- see this site for more info http://www.wrightslaw.com/nltr/14/nl.0218.htm

Good news in our case (never updated my original post) -- Jon's most recent spate of violence (in 2013) turned out to be triggered by pain (he's nonverbal, so we weren't aware that he had a nasty case of plantar fasciitis). He ended up getting hospitalized and put on a bunch on anti-psychotics that didn't work, but when he stopped walking, that was a clue that something else was going on. Docs took him off the anti-psychotics, put him on pain meds and treated the foot with an orthodic boot, and his behavior had a big turn-around.

 

[Nakamova]

That's great to hear Karen. Worth keeping in mind when diagnosing behavioral issues in someone who is non-verbal.

 

[jejrrlq]

Thanks Karenb for your response. We have been on the zonegran only for about 10 days and his behavior was awful last week in school. I'm completely at a loss and the psych appt we had for yesterday was pushed back to April 1 due to a conflict for the doctor. I'm so frustrated with the school (who is restraining him) who seriously just thinks he's a bad kid. I finally demanded eval for iep and they were supposed to do that yesterday but it snowed. Seems like one delay after another gettig my son the help he needs.

 

[jejrrlq]

Funny also that our neurologist heard that his behavior still bad on zonegran and had to get a little "dig" in that "well I hoped it was the trileptal like you thought but clearly it wasn't since we are now off trileptal and the behavior issues remain". I feel like these professionals involved in his care believe that this is a parenting issue. I'm so frustrated. Wish we could go back a year before epilepsy.