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Tuesday, October 11, 2011

Drug Trial Appointment Recap

Yesterday was Drew's STX209 drug trial appointment #1.  Well, and #2, actually.  Apparently, Seaside allows study participants to combine the first two appointments if desired. 

We parked in the parking garage.  Drew wouldn't get out of the van, so Eric had to pull him out.  Drew, of course was not happy about it and fought him the whole way.  We decided to put him in our giant Maclaren special needs stroller to make it a little easier.  That thing is supposed to hold up to 140lbs, but let me tell you, while it held Drew's 97 lbs, it was pretty hard to steer. 

Anyway, we got out of the garage and went up to Dr. Berry-Kravis' office.  They came for us pretty quickly.  Drew didn't want to go into the room right away.  He peeked his head in and out while we talked over some trial specs.  The research assistant came in, and because she had another family coming, she tried to get Drew started with the EKG right away.  Of course, Drew didn't know her at all, and he didn't want to have his shirt taken off, and he didn't want her to put those "stickers" on him, and didn't want to sit still, and most of all he didn't want to NOT pull off those "stickers"  The outcome made Drew look like he had a heart condition.  Which he does not.  So, we decided to try again later.

Next we had paperwork to fill out and the first blood draw of the day.  Since he had trouble allowing Dr. Berry-Kravis (EBK) to take his blood pressure, we knew we'd have to restrain him.  We decided the best course of action would be to put him on the floor.  Eric and I both straddled him.  I was in charge of arms and Eric had his legs.  We couldn't use the lidocaine because he had to keep some film patches on his arm for forty minutes if we wanted to do that, so we knew that would not work.  EBK tried his left arm first and wasn't able to get a vein.  We switched arms and tried again.  He screamed and struggled the whole time.  It was hard to watch.  Once she hit a vein though, the blood flowed well and they got everything they needed. 

After that, we did the second EKG.  Eric and I set him up in front of his DVD player, put him in the stroller and we put the "stickers" back on.  Once that was done, Eric and I held his arms and legs still by hugging him tightly.  Eric made lots of farting noises with his mouth, so that helped distract Drew. 

We got about a 45 minute break and went down to the cafeteria for lunch.  The whole time, Drew kept asking if he could go back to the doctor's office.  While we were gone, we were assigned to a new room.  I had more paperwork to fill out.  The lab came back with Drew's bloodwork and we got the go-ahead to administer the trial drug.  We discussed trying Xanax to calm Drew's anxiety for the next blood draw.  EBK prescribed it and Eric went down to the pharmacy to get it.  He got back about twenty minutes later and we gave Drew the Xanax.  It didn't really have time to work though, because the blood draw had to be done after a certain amount of time after the trial drug was administered.  And the Xanax hadn't had enough time to work. 

We arranged the blood draw same way on the floor and EBK started with his right arm first.  He screamed, "Ow!  Stop it lady!" at one point.  And after it was over, he told EBK, "You are NOT NICE to ME!"  Poor guy. 

After that, we were allowed to leave.  Drew was happy to get out of there, but it was a long drive home, with him asking to go home repeatedly.  We all slept until 7:30 this morning, leaving us about a half hour to get everyone ready. 

We learned some things about the way we'll do things in the future to make each trip smoother. We go back in two weeks.  We discovered when we got home that we had left his Family Feud DVD there.  I will update about his anxiety soon.  Not sure if we got the actual drug or a placebo.    We go back in two weeks.  Eric and I are very proud of him.  It was a rough day for him, but he got through it the best he could.

3 comments:

Bonnie@TheFragileXFiles said...

Sounds about as fun as our first (two) appointments went..... We are exactly two weeks ahead of you. It'll be so interesting to follow each other's progress....

Kristiem10 said...

It sure will. I am exhausted. I bet you were, too.

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