Lord of the Fries: Return of the Toad

What? It's a mash-up. Get over it.

 

If you've been following the blog for a while, you have seen me chronicle Josh's decline in to a very bad place starting early last summer and continuing through December. We seemed to finally get a handle on things and pulled him back from the Dark Side but had to go through much trial and error pharmacologically to do so.       

 

By about mid-December we had him back. Mostly. The frightening, uncontrollable rage and aggression were pretty much gone, he had his smile back, and the heartbreaking, haunted, empty look was gone from his eyes.

But, he was now on Zyprexa, on top of the Celexa and Lamictal that he has been on for years. Zyprexa is hard-core. In the same family as Abilify, Risperdal, Seroquel, and Geodon, it is an atypical anti-psychotic, commonly used to treat Schizophrenia and Bi-polar disorder. ANTI-PSYCHOTIC. With a lovely long list of some pretty nasty side-effects. I have always resisted even trying these drugs with him, they scare me to death. But as you may have gathered from the posts, when we got to the point of absolute despair, there wasn't really any more choice in the matter.

One of the most common, and probably least frightening of the side-effects of these types of drugs is weight gain. And sure enough, over the few months of trying all these meds, Toad gained over 10 lbs (13, to be precise)... literally, in just about 6 weeks. It was shocking. He's barely gained that much over the course of a year before. Remember, my kids are small, their rate of growth is snail-like. This is good for Josh. So this sudden explosion of his mid-section was distressing. At our last visit to his Dr in December, he told me that he would really prefer Josh not be on the Zyprexa at all, so I should try to wean him off. All I could think was, what are you kidding me? WE JUST GOT THIS UNDER CONTROL. But he was right. I don't want my Toadie turning in to a big Bullfrog or developing any of the other potential problems that could come from being on the medication.   

 

Ironically, and really, the point to this whole post - I GET DISTRACTED, I'm sorry - what his Dr suggested I do was to increase his Celexa as I was weaning the Zyprexa. Celexa. Yes, the SSRI that recent studies have apparently shown to be of no use in the treatment of children with autism. THAT Celexa. The medication that Josh has been on for 7-8 years now, that we started only because I convinced his Dr to let us try it.

So here's the kicker. I'm a science person. I believe in what good science tells us. I do not fall for "miracle" cures, treatments or people who are crooked telling me what I should do. Even in desperation. Risperdal, scary as it is, has been studied, and proven to help treat some of the more difficult behaviors you can see in autism. We tried it first. It turned him in to a zombie (this was when he was quite little) so we stopped it and I told his Dr I wanted to try Celexa. Dr wanted to know why, as there was no literature, evidence or any other good information regarding its use in autistic children. Why? Because I knew several families whose kids were on it and it was helping. That's why. Anecdotal reports were all I had. And I KNEW this wasn't logical, wasn't based on good science, but I needed to try it. Skeptically he gave us the prescription. Within 48 hours of starting him on it, Josh's self-injury behaviors stopped. Literally, that suddenly. Just stopped. He had gone from tantrums that would last hours and hours leaving him bloodied behind the ears (he used to hit himself) to tantrums that would last 15 minutes - without any self-injury. Well then. I don't know about you but that was all the evidence I needed.

So he's been on it for years. Now there are no long-term studies to tell us what the effects of being on something like this for long periods of time are. So I honestly don't know. Periodically we have tried weaning him from it. And I had been successful in cutting his dose down quite a bit last Spring.

Or so I thought. It didn't really occur to any of us until unfortunately quite late in this whole event, that maybe all of the down slide was due to the decrease in his Celexa dose. In my defense, we have weaned his dose in the past, and never seen anything LIKE the aggression and rage that he demonstrated this time. This seemed different. But, once we had him settled, his Dr and I discussed it, and he seemed to feel like maybe we could have just increased his Celexa dose in the first place, as he'd been on the same dose for a long time and then weaned, maybe he just needed it increased to account for growth, weight gain, etc. Sounds simple right? Well, when you're worried about the long-term effects of something that has been shown not to help in very recent studies, your first thought isn't likely to be, hey, let's increase that and see if that helps.

 

 

Right.

 

 

 

 

So we didn't. And I'm trying not to look back now and beat myself up too much over it. But this is what we've done. As of the beginning of this week, Toad is completely off the Zyprexa, and on a much higher dose of Celexa than he was on, except for when we first started it. And he's fine. Not just fine, he's great. My Toadie is back, REALLY back, bouncy, happy, silly, sweet Toadie. He's even been wonderful in the car. His aides at school can hardly believe it - they've been through so much with him this year and they don't know I took him off the Zyprexa, but they've been raving all week about how good he's been, how sweet, and how much they're loving it. So it's not just me seeing this. He's back, and really even more himself than when he was on the Zyprexa. The trade-off? He's back to not sleeping through the night sometimes (the Zyprexa really made him tired).

But I can live with some sleep deprivation to have my baby back. 

 

WHAT? You know it's the first thing you thought of when you read that.

 

So here we are, my Toadie is back, I'm no longer on the brink of whatever I was on the brink of, all because of a medication that has absolutely NO science behind its effectiveness / use in autistic children.

Hmmm. This leaves me in a bit of quandary.

Especially when it comes to talking to other parents of more recently diagnosed children. I won't advocate trying the latest cure-of-the-week, ever.

But there is clearly something to be said for sometimes going where otherwise you might not, Toadie is living proof of this. Maybe there simply aren't enough studies yet to show us everything about Celexa. Maybe, since I am also a firm believer that not everything that is being diagnosed as Autism these days (and over the last decade) necessarily is, it has something to do with the differences between those with the same diagnosis. I don't know. I just know that it is currently on my things-I-am-thankful-for list and I will always be grateful that Josh's Dr was willing to "humor" me and try it, all those years ago.

 

This is Toad's school picture from back in the Fall. 

 

 

 

I hate this picture. It tears my heart out. Because all I can see is distress, I can see the intruder hurting, haunting him. That's not my Toad looking back. I can see it all in his eyes. And this was not just a school-picture thing, believe me when I tell you that this is what he looked like for 6 months.

 

 

 

 

 

I took this picture today...    

This is my Toadie. And even if he's not smiling...

 

you can still see the difference in his eyes.

 

This is my Toadie. He's back.

Hide the toothpaste. :)