What IS this? And what would you do?

[BestICan]

Hi all,

I've been reading here, but not posting much for a long while. My difficult child, now 8, is doing pretty well in lots of ways. But I'd love some advice regarding the days wen he's NOT doing so well.

He's a very intense kid with poor impulse control, and that has led to problems in school. Usually he gets in trouble for saying something inappropriate or being mildly defiant.

But when he gets stressed or excited - I mean REALLY stressed or excited - his behavior goes completely haywire.

difficult child's Sunday School class helped lead the service at the temple tonight. I could have written the script for tonight - I knew exactly how it would play out before it happened, and it did happen exactly as I'd expected: As soon as he walked in the door and into the rehearsal, he got completely crazed with excitement - jumping around, being waaay too silly, shouting. I wasn't there but apparently he was EXTREMELY disruptive (in a happy silly way). The group leader told him to stop several times, and finally removed him. husband gave him quite a talking-to, and he eventually got himself under control.

Then, during the actual service, he was fine. Appropriate, charming, etc.

You'd think I'd be happy that he pulled himself together for the service. But I knew he'd be able to do that. What really disturbs me is that he doesn't seem to be aware that his behavior was "wrong", and really truly doesn't understand why he should be embarrassed for having behaved that way. I think if I had been there I could have used threats or rewards to keep him under better control. But I'd really like for him to internalize it, and at least TRY to do it on his own.

He's doesn't have problems reading social cues as far as I can tell. In fact, I'm sure if some other child were acting like this and difficult child was the calm on, difficult child would notice it and complain about the other child. But it's like, when difficult child is in this excited state of mind, he has no self-awareness.

How would you work with your child to prevent getting into this overexcited state? How to help mitigate it when it starts to happen? And how would you talk about it with him the next day?

If you're wondering about his history: difficult child doesn't really have a mental health or ADHD diagnosis - just partial complex seizures that are totally under control and have been for a while. He sees a therapist regularly. I've read through the ADHD literature and I don't think he qualifies. (His therapist thinks maybe ADHD but difficult child is usually fairly wound up when he sees him.) I'm almost entirely certain he doesn't have bipolar. On most days he's a kid who plays with friends, builds with legos, and reads, reads, reads. He's sensitive, intense, and can get pretty ratty with his little brother.

Thanks for listening! I'm so glad to have this board as a resource.

 

[meowbunny]

I think I'd try to role play before an event to alleviate some of the anxiety. The more that is known, the less stressful it becomes. Also, like the rehearsals for the play, the more the behavior is rehearsed at home, the better chance that it will be appropriate when occurring.

Since your son does seem to understand proper social behavior, have you tried taping him so he can see how he looks to others when he is behaving inappropriately? This may help him understand just how annoying he can be. If you do this, be sure and catch some of the people around him so he can see the effect he is having on others.

I found with my daughter at ages 8 and 9 that if I gave her explicit instructions (no jumping, shouting, running, pinching, hitting, etc.), the better chance she had of behaving for that event.

 

[smallworld]

What medications and doses he is taking for seizures?

 

[tiredmommy]

My Duckie does this also. She winds up tighter and tighter. Unfortunately, what starts starts out happy and goofy usually will quickly change to angry and difficult as she starts to spin out of control. What's worse is that I'm a trigger for Duckie's outbursts and I'm the Sunday School teacher. The only thing that seems to work is that the other teacher and I swap difficult children (her granddaughter has a wicked case of adhd) and we act as 1:1's for these two kids. Sometimes, like during our Christmas presentation, we had one adult for Duckie, one for S, and a third adult for all the other kids.
The only other thing I do is go over what is going to happen and what is expected from her. Ex: "We will be rehearsing our presentation today in the sanctuary. Please remember to behave respectfully there because that is where we gather together to worship. We will be doing a final run through of the script. You will be with Mrs R as you have several readings and she is in charge of the readers. We will practice the carols between readings, J will play piano for this. I will be with Mrs B, helping to direct the non-readers while they place the decorations. I need for you to stay calm and focused as we do this, as we only have about 45 minutes before J needs to rehearse with choir. We have a lot to do in a short period of time. Please no yelling, running or being disruptive during the rehearsal or service."
Very detailed. I also tell her that there's a chance things might change but I need her to go with the flow. Luckily, it works when she has another adult looking out for her.

 

[BusynMember]

Has he ever been evaluated for any childhood disorders? I mean, more than seeing a therapist--has he had a complete evaluation?

 

[Sara PA]

Is his seizure disorder located in the temporal lobe? Does he have memory of his outbursts? Is his perception of what happened skewed? Does he seem to be himself when these episodes happen? Does he get some sort of look in his eyes that makes him seem like someone else? How is he afterwards? Tired/sleepy and withdrawn for a while? Are the episodes of a predictable length of time? Do they follow a pattern? Partial seizures effecting the part of the temporal lobe that controls emotions?

 

[BestICan]

Hi, and thanks for your questions/advice.

Smallworld, he's on 100mg of Tegretol 2x daily. Same dose he's taken for almost 2 years. Just had bloodwork and he's in "low therapeutic" territory and the number was - I think - 4.9?

Sara, I get your line of thinking but these are no seizures. His seizures are the stop-and-stare kind, with the sleepiness immediately afterward and THEN very odd behavior. I'm firmly convinced that these are not post ictal states, especially because he was able to reign in the behaviors when he had to.

Midwestmom, he's never had anything other than the neurological evaluations that came with his seizure diagnosis. husband and I spent $500 talking with a psychiatrist(without difficult child)and the guy alarmed me with his snap judgments - was ready to diagnose difficult child with bipolar and ADHD while his seizures were uncontrolled, then mentioned that he didn't know anything about seizure disorders. Bleh. I guess I've never gone to a neuropsychologist because therapy/maturity seem to be having a positive effect over time, and he has a teacher who's willing to work with him.

Meowbunny, it's funny - taping him was the first thought I had. Not sure how practical that would be, though. I guess I could enroll him in gymnastics again and tape him when he inevitably goes nuts in class.

TM, thanks for the idea. Whew, that's a lot of work, huh? difficult child has a real talent for tuning me out when I get into talking mode.

This morning difficult child seemed willing to describe the situation as it really was - he agreed that he was out of control, the leader was "right" to discipline him, etc. He said he "just needed to get his energy out" and, when I asked, he honestly couldn't think of another way that he could have gotten out his energy.

 

[susiestar]

It sounds like he is a pretty happy kid. I would have run from the psychiatrist you saw also.

My daughter has Absence Epilepsy, is this the type of epilepsy your son has? I can say that if his medications are in the low therapeautic range you are problem going to have a medication adjustment soon. You problem know more than I do about this, we have only been dealing with this for about a year. I will say that with-o Sara PA's advice we would be treating my daughter for anxiety and inattentive ADHD. Sara advised a neurologist consult BEFORE medications, apparently this was the norm until a few years ago. I am VERY glad we did, because NO ONE expected seizures!!! She is much better, and is happier with herself.

I would say that if your son says it was excess energy, maybe before events you should have him do something to work off energy. Laps around the house, jumping on the bed, something that works for him. Sometimes we have to anticipate what may set our kids off and prepare. Sometimes we can head things off at the pass.

I also wonder if there is a sensory integration component. Not sure if you are aware of sensory integration disorder, but it is where the brain cannot process the stimuli sent from the senses. I think it is probably vastly underdiagnosed. A shame, as treating it can make a family so much happier.

My son reacts very badly in church. For years we could not take thank you in for the service. He just could NOT cope, and afterward we had such a stressed little guy. Now, at the grand old age of 8 (HE thinks he is "practically all grown up"!!!) he can sit through a service with the organ and the choir and everything. It is great to see.

This is usually diagnosed by an Occupational Therapist (Occupational Therapist (OT)). I strongly recommend reading "The Out of Sync Child" by Carol Kranowitz, and keeping your mind open. Or, Kranowitz has what is a more useful book to my family, called "The Out of Sync Child Has Fun". It has ALL kinds of exercises that work to help the brain/body sync up better. And they things in the book are FUN!!! Most of them are NOT expensive, and there are ways to modify them for budget, preferences, etc....

It willcertainly provide ways for him to use the excess energy. (If it was my budget, I would get the first book at the library and the Has Fun book at the bookstore.

The one idea that has helped my Tyler more than any is the Crash Pad. I took 2 twin size flat sheets and sewed them together on 3 sides. Then I put all our out of season blankets, pillows we don't use anymore, and some pillows and fluffy comforters from the thrift store in it. I never did get around to sewing the 4th side shut, but it hasn't been a problem.

thank you can jump off the bed or couch onto the crash pad. He can sprawl on it to read a book, roll himself up in it, and even mush it around to make a "nest" to comfort himself when he needs that. Or when he wants to read or watch a video in it. I did have to make a HUGE point that he is NOT to crawl inside it ever. Just scared me to have him do that. But with the 4th side open I can use out of season bedding rather than have to buy items to fill it with.

I think this might help, esp as you don't think it is ADHD. Just a thought that hit as I read your post.

Welcome to our site, and hope you can help him get a handle on this.

Susie

 

[BestICan]

Susie,

Thanks so much for your ideas! I had forgotten about the Occupational Therapist (OT) practice that I had been looking at last year. It's not covered by insurance but at this particular moment in time I think we're able to afford the assessment. That actually does sound like a reasonable next step. If he is having trouble processing stimuli (and that sounds very plausible) then it would be very useful to know what's going on, and what they recommend. I'll give them a call on Monday.

Thanks for the idea, and for the book recommendations as well.