ChezPerky

We saw the developmental pediatrician today.  We were going to spend about 10-15 minutes talking about medication and the rest talking about behaviour managment issues.  That was the plan.  But we’ve been trying to sort out the dose on the patch, and not been having QUITE as much success as we’d like, so we ended up spending the entire 50 minute session working out medication ideas.

Essentially, the patch is working really well.  But not exactly the way we’d like.  At the lowest dose the patch comes in, his hyperactivity/impulsivity was still not controlled quite enough.  At the next dose (50% higher), his hyperactivity/impulsivity was totally under control, but he became melancholy, lethargic, disinterested, and sad.  So we moved him to 1 1/4 patches of the lower dose, which is a pain in the neck, but doable.  Unfortunately, we still saw the mood side-effects, though to a lesser degree,  which is just not okay.  It’s very difficult, this balancing act.  It breaks my heart.  I don’t want to lose my vivacious little boy who is so full of life and love and energy and hope and beauty. 

Switching to another stimulant isn’t really the answer, because we’ve been there, done that, and getting him to TAKE it is impossible, plus it would be just like using the patch – they’re all closely related.  We know the patch is working, using more of another stimulant isn’t going to change what the patch is doing at this point. 

So we’re going to augment with another medication entirely and work with that.  We’ll give it a few days and see how it’s going and adjust the dose as necessary.  Dr. S. is going to Ocean City this weekend and into next week.  I feel like my lifeline is going away, even though he told me not to hesitate to call if I needed anything.  I don’t want to call him on vacation.  He reminded me that he knew when he decided that he would not sign over his practice except if he leaves the country, that this means that he gets interrupted on vacation for five minutes several times a day, and he’s okay with that.  Still, I don’t like it one bit.  That being said, we’ll probably NEED to be in touch, since we’re moving into starting a new medication and will need to be monitoring J pretty closely. 

We’re starting at a teeny, tiny, ridiculously small dose.  0.2 ml of the medication (there are 1mg/ml).  I’m hoping we can get J to even take it.  Really, really hoping.

I feel this tremendous responsibility to J through all of this.  I feel like we are manipulating him, in a sense.  I suppose in a way, we are, though we are doing so to help him be able to function in a positive way.  We want him to be able to learn optimally in a classroom, function socially like a normal preschooler/kindergartner, behave appropriate as a  typical  child in society.   We want him to feel like he is in control of his little world, and like he has a positive effect on the world around him.  We don’t want him receiving only negative feedback from  teachers and friends.  We don’t want him to be ostracized for his inability to control his impulses.  Still, this manipulation is a tremendous responsibility.  It’s difficult to know that we’re always making the right judgments.  I wholeheartedly believe that we are doing the right thing by choosing to medicate him, as we are also choosing a behavior management approach in tandem with the medication trial.  I just sometimes wonder if I’m adequately assessing the effects of the drug.  What if I had a bad day and I’m looking at his behaviors through tinted glasses one day?  What if I’m being unfair or biased?  What if I’m not the RIGHT person for this job?

People see me with my triplets and they say, "You must be so tired" or "It must be so hard to parent triplets."  But they never consider that the triplets are the easy part.  They practically parent themselves right now.  But every time I turn around, I feel like I’m doing the wrong thing with J.  What if I accidentally yell at him and scar him for life?  He’s so sensitive.  What if I don’t give him enough positive feedback today?  What if I don’t choose the right routine for him?  What if I can’t find the right scenario to help him control his impulses to avoid the temper tantrum or conflict in the store?  What if I make the wrong parenting choices today?  What if I give the wrong input to the doctor and we choose the wrong medication based on faulty input from me?  What if this has long term consequences that we didn’t know about?

These are the things they don’t tell you about in the parenting manual.  These are the things I’m kind of glad I didn’t know about ahead of time.  If I had, I might have chickened out and missed out on all the fun stuff. 

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