Tuesday, April 17, 2012

"Aren't You Worried About The Long Term Effects of ___?" -- "No Not Really..."

(Originally written & published on April 17, 2012)

Aren't you worried about the long term effects?" 

I get asked that question often on my Autism Daddy Facebook Page & blog.  I hear it when I talk about the meds that Kyle is on.  I hear it when I talk about our use of melatonin.  I even hear it a little when I talk about Kyle eating microwave popcorn every day. 

"Aren't you worried about the long term effects?"

And when I really think about it my honest answer is..."no, not really".  I talk a lot on here about trying as much as possible to live in the moment, live in the here & now.  And I can somewhat control the here & now.  I can't really control the future. 

You've read HERE what a nice stretch my son Kyle has been in lately.  Besides his lack of appetite (and we fear he is losing weight again), he's really been AWESOME lately. 

And I give his new school a lot of the credit.  I give the wife a lot of the credit.  I'll even pat myself on the back a bit. 

But you know what I also give a lot of the credit too this time? 
The meds & supplements he is on. 

He is currently on very small doses of the prescription meds klonopin & thorazine.  We also give him a fish oil pill (Costco brand), a multivitamin & a probiotic (CVS brand), and good ol' melatonin (whatever is on sale).

He's been on the klonopin since last July, the thorazine since last September, melatonin since 2009, and the others since December.

And I'm not worried about the long term effects...mental or physical.  Because if you saw my son Kyle when he was off all meds last summer and had what I've termed "The Summer Of Rage" and you saw him now, you'd have to say he's a much more relaxed kid.  Not a zombie by any stretch of the imagination, but just a happy guy.

Now I know you're thinking "how can he not be worried about the long term effects?  This one study said this and this other study said that."  Just like in our autism world, all these studies are not white & black.  There's a ton of grey in there.

I am lucky enough to live in the NYC area with some of the world's best medical minds at my disposal and we trust our pychopharmacologist who prescribed the klonopin & thorazine.  She's worked with asd kids for DECADES.  And we trust our pediatrician to speak to the psychopharmacologist so that they are on the same page, and to look out for Kyle's physical well being. 

And maybe that's naive of us, but we have to live in the here & now, and we have to deal with what we can see. 

Before melatonin what we saw was my kid didn't get to sleep til 11pm and he didn't get enough sleep and that's not good for growing boys.  With the melatonin he'll sleep from about 9pm-6am most nights.  More sleep is good for my boy & it's good for the wife & me.

Before klonopin & thorazine what we saw was the summer of rage.  Since September, he has been doing really well.

And since the fish oil/ vitamin/ probiotic combo in December he's been even more mellow and well behaved.  Not sure if these supplements are the reason, but I see no reason to stop now.

Now, if somebody told me DEFINITIVELY that this drug is causing his lack of appetite..or that drug is messing with his liver of course we would take him off of it. 

And of course, we know that he probably won't be on this current cocktail of meds & supplements forever.  Something will come along and he will probably need to come off some of these things for one reason or another.  And when he does I'm CERTAIN it's going to be AWFUL.  I've read that coming off klonopin & thorazine can be traumatic.  But we will deal with that when it comes along.  I will take a GREAT 12 month stretch now and deal with the possible consequences later, and I think if my son could tell us he would choose that as well. 

And I know that many people are afraid to go the prescription drug route.  They are more worried about side effects or long term effects when it comes to prescription drugs.  But just because something's natural doesn't mean it can mess you up just as much as a prescription med.  Do a google search for any of the DAN dr supplements (GABA, 5-HTP) & side effects or even St Johns Wort & side effects or long term effects and the stuff you'll read is just as scary as the prescription stuff.

I'm not saying I'm against that stuff.  It may work for you.  But just don't tell me that it's safer than my prescription because it's "natural" or a "vitamin"

All this to say that we are not worried about the long term effects of any of the things that my son Kyle is currently on.  And if in the year 2023 he does have a long term effect that we can positively pinpoint & blame on one of the meds or supplements he took then we will deal with it then... and I will CURSE the 2012 version of myself. 

But for now we have a happy, healthy kid and we have to ride this out for as long as it takes us.

You all probably think I'm crazy or a bad parent, right?

Oh well....  I'm a big boy, I can take it.



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