Zack & AJ Korman (Burnsville, MN)

by Bonnie Korman

I remember fondly the day we started the Arbaclofen trial at Rush in Chicago.  Of course, we didn’t know if they were getting any of the medication or the placebo, but the anticipation was thick.  We knew, logically, that nothing was going to change immediately.  That didn’t stop us from we watching our twin boys with nervous excitement, after they swallowed that first applesauce spoonful with the magic pill buried in it.

During the course of the STX209 trial, we went back and forth as to whether we thought the boys were getting the medication, or the placebo.  We saw some changes in them that might have been from the medication, but it was hard to say.  Then, during the last three weeks of the trial, they were weaned from it.  And that’s when we saw changes.

Zack has always been more autistic than AJ, and more controlled by his anxiety.  When he’s overwhelmed, he throws his head back and screams.  It’s his go-to reaction for everything from “This iPad is not bringing up my video quick enough” to “Somebody just rang the doorbell and it startled me.”  Both big changes and little ones send him into blood-curdling screams.  During the trial though – those several weeks that the boys may or may not have been on Arbaclofen- the screaming nearly stopped.  Then suddenly, a week or so into the weaning process at the end of the trial, Zack screamed for the first time in a long time.  Their dad and I looked at each other in amazement.  We hadn’t even noticed that Zack had stopped screaming until it came back.  We had completely taken for granted that he was dealing with change and transition better during the trial.

That was how we decided to definitely continue on with the STX209 extension.

Over the course of the next year and a half, both boys took doses of Arbaclofen daily, and both did well.  I continued to wonder – how much of their progress was due to the medication, and how much would they have progressed anyway, just from normal maturation?  I thought it was helping them, and the school regularly sent home glowing reports of the boys’ progress and behavior.  But they were still a long way from being typical 2nd graders.

Zack and AJ are identical twins.  Genetically, they are basically the same person.  But they have always had different behaviors and different ways of expressing their anxiety and cognitive disability.  AJ is friendly and basically happy.  He gets anxious in situations where there are a lot of people, and is terribly shy if you put him on the spot, but he loves hanging out with his sister and her friends.  He notices everything and he’s very sensitive to other people’s emotions.

Zack is much more resistant to social activities.  He does a lot more of the common autistic and Fragile X behaviors; if he’s not laying down, he’s hopping around and flapping his arms.  He squeals and screams loudly and has no appreciation for personal space.

When he was on Arbaclofen, Zack hardly screamed, ever.  Things had to get pretty bad before he’d throw his head back and wail.  He got through most transitions without incident, and was a bit more willing to try new things.  And throughout the downward titration, things weren’t too bad. The first full day that they were completely off the drug – the first day with no Arbaclofen in 17 months – I saw a Zack I hadn’t seen in a very long time.

I don’t even remember what precipitated it, but Zack had the mother of all meltdowns.  He viciously bit his own feet, ankles, and legs. He threw everything he could find to the floor and then kicked it.  Pillows and couch cushions, books, my purse, his favorite monkey toy.  I watched as he picked up the iPad and whipped it to the floor.

Luckily it’s in a very good protective case, and it bounced off our hardwood floor.  I grabbed it before he could kick it.

AJ hates to see his brother so upset.  He cried and cried for the duration of the meltdown – around 45 minutes.

When it was over, I felt like the living room was full of land mines.  I tiptoed around and took care not to make any sudden moves.  I don’t know what set him off, but I certainly didn’t want a repeat of that.

Yesterday we were setting up the above ground pool in our backyard.  Once I had it constructed, all the kids wanted to get in it right away, even though we hadn’t put water in it yet.  The pool walls aren’t very stable without the water, so I made them all get out.  Zack screamed and did something I don’t think I’ve ever seen him do; he chased and tried to attack the other children, both his siblings and a couple of neighbor kids.  He is well known for reaching out to pinch people if they get too close to him while he’s overwhelmed (and just being in a grocery store is overwhelming for him).  But I don’t recall ever seeing him scream and randomly chase people around like that.

Luckily the kids thought Zack was being sort of funny, and dodging him became a game for a few moments, before I could corral him into the house. I say “luckily,” because one of my greatest concerns is how other people will react to him.  Zack’s behaviors can be very hard to understand.

One thing I hear repeatedly from other parents, now that their kids have had to quit taking Arbaclofen, is how the kids have retreated within themselves and never want to leave the house.  That’s a good description for Zack, now that he’s off it.  He’d just as soon bounce around the room with his iPad in his hands and Mickey Mouse Clubhouse on the TV as go anywhere.

I hear a lot of parents refer to Arbaclofen as a miracle drug for their children.  That it allowed them to be social and to emerge from the box of autism.

I didn’t think it was a miracle for us.  Zack still had a lot of social anxiety on it.  He still couldn’t tolerate a children’s birthday party.  He couldn’t enter a crowded waiting room.  We could never take him to an amusement park or the state fair.

But at school, and at home, and on holidays with relatives, and on routine trips to the store and walking around the mall, Zack did pretty well, and was improving all the time.  At school especially he was a rock star.  On the last day of school he watched a variety show in a crowded, noisy auditorium, and he made it through the entire show.  His teacher was in the show and she called me to tell me that from the stage, she could see both boys sitting and watching her attentively, just like all the other kids.

Just like the other kids.

Three weeks later, with no Arbaclofen, there’s no way that would happen.

We are going to try another anxiety medication, of course.  We have to. But it has become very clear to me that I underestimated the benefit the boys were getting from Arbaclofen.  I thought that because they both still suffered from anxiety, that it wasn’t really helping.

I had forgotten how bad it really could be.  I forgot about that soul-shattering screaming.  My poor Zack is miserable.