Friday, July 22, 2011


We recently have been having some behavior problems with Trajan. Called the pediatrician to ask about it and maybe a referral for play therapy or something and they said it was developmentally normal. Called the pediatrician again after a couple months and said no, we really need to do something and they had us in for an appointment. She said she wasn't seeing any red flags, but almost begrudgingly gave us a referral to play therapy. Went to play therapy and after a few sessions she said we might be seeing some developing ADHD behavior, but he really didn't need more play therapy. She would write a letter at the start of the school year with some tips for helping him.

Called the pediatrician to see if we should see anyone else for some guidance on the possible ADHD front (the play therapist had recommended a psychologist for evaluation and since I was more familiar with behavioral pediatricians, thought I would ask his normal pediatrician). They scheduled us for an appointment.

So, so far, everyone has been pretty much indulging us, but have seemed to think we were just seeing a problem where there wasn't one (despite reporting issues in multiple settings: home, school, gymnastics).  Not quite patronizing, but the attitude seemed to be we were just expecting too much.

Is validation the right word? I don't know, but the appointment was yesterday and we didn't get any recommendations for a path or even get past his infant history (his doctor is on maternity leave and so were catching the other doctor up since she's only ever seen Chiron. And yes, the theme of the year is doctors on maternity leave.). Why did we not get past this?

My arm immediately after

My arm this morning

He had an episode. Went from this funny, sweet boy explaining the blood pressure cuff and where his heart was to the nurse to this non-verbal, grunting, hitting overwrought thing. 

The pediatrician was great about it. Talked some as I tried to work him though it, took notes and tried to help. We stopped trying to talk about anything and instead said she would call me. He didn't want to leave the room. He didn't want to get in the car. He didn't want to go for a walk. He indicated with his head that he was not mad. That he was not sad. I asked him if he wanted to go see TK (one of the front office staff). I don't know why, but this worked. Likely was just timing. He stood up, walked out and by the time he walked the twenty yards to the water jug was perfectly fine. Smiling and laughing with a nurse while going back to restock the sticker basket.

He was fine. I took him to run an errand with me to have a pump tested (it tests fine, but still isn't working for me, but that's anther story.) Helped pick up his brother. Ate dinner. Got ready for bed. Went to sleep. All while being a sweet, communicative helpful boy.

The pediatrician said she would call me so we could discuss more of what he is doing, what the path is and really what is going on.  She did ask that we try to catch one on video if it is at all possible (recognizing that they aren't that frequent, but saying a cell phone video would be fine), because it is really hard to convey the extent of what was going on.  Similarly, she was really glad that she got to see it.  She said that she actually thought the first step might be the neurologist rather than either a psychologist or behavioral/developmental pediatrician.  We are supposed to pay particular attention to the correlation of nose bleeds with any of these behaviors.  She said she would write up a note and send it to the play therapist and the neurologist as well.

She hasn't called me yet, but I do feel like we are on a path to help him.  And that is good, because this has to be hardest on him.

I just realized I never really wrote a description of what he was doing.  This is hard for several reasons.  First off, some deficits in me.  I am not a very visual person and don't store information about how things looked.  Second, my memory seems to be short for negative events (Paul says this is a feature!).  Third, I was trying to help him and deal with it while still communicating with the pediatrician.  But here's my best attempt.  With no trigger, he started yelling.  Not words, but sounds.  Short, staccato-type noises without language in them.  Flailing and hitting and perhaps best described as a look of intent as he appears to set out with the goal of causing harm.  Of scratching, hitting, slamming, headbutting, whatever necessary to lash out in what appears to be rage.  There is crying throughout and blood running out of what I think was his left nostril.  Wrapping arms around him to hold him against the rage just makes him appear to add frustration to the rage.  Ignoring repeated hitting doesn't seem to be noticed by him.  He doesn't seem to have awareness or respond to his surroundings or the doctor or anything I say.  He seems to calm down.  I crouch in front of him as he seems like he may be able to communicate.  He doesn't lash out.  He doesn't attempt to hit or kick.  He just sits there befuddled, crying.  He doesn't want to leave the room.  Then suddenly he nods to the idea of going and seeing TK.  He reaches out and takes me hand, picks up his water cup (which had gotten knocked over, the doctor tells me to not worry about the spilled water and just leave it) and we walk into the hall.  He looks up, smiles and walks to the water jug and refills his cup.  Then he's the laughing, fun boy.

I didn't get a picture of it, but he also raked his own arm with what I assume was a nail.  And while we were standing at the front desk, I noticed red up and down my arm.

On the question of trigger, I say there was no trigger because we really couldn't identify one.  The best I could come up with is we were talking about him, but as the pediatrician pointed out, we were talking about his jaundice as a baby, not really something that should upset him.  The only behavior we had gotten into was to praise him for having stayed in the green (behavior system at school) for both of the last two days and getting a special note the day before complementing his behavior!

I'm not sure why I'm writing this, except perhaps to document it.  I can not imagine what it must be like to be inside his mind at the time.  The pediatrician mentioned the idea of prefrontal cortex seizures.  Whether it's medical, psychological, behavioral or even produced by us as parents, I really hope this is a good step towards us finding a path where we can help him so he doesn't have to experience this.

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  1. I wish I had some magical words that would make it all okay. You've done an amazing job of knowing your son and advocating for him. I'm glad that someone is finally acknowledging what you've known. Hang in there (and get in touch any time).

  2. I think the neurologist is a good first start. It almost sounds like seizure activity. They can present in all sorts of ways with behavioral changes. Good luck!