Thursday, 27 June 2013

The Autism Study Fiasco

What a day!!  We just returned from Children's National Medical Center and yet another study visit for Jack. How we ended up there was quite the process...

We were originally scheduled to come in July 3rd since we were just there June 19th. Then I got a phone call last Friday evening from the coordinator saying that the arm of the study that Jack has been on was suddenly closing and he had to progress to the next phase.  The phase that he was in involved a short period of being on memantine and then another period where he would be randomized and either receive the drug or a placebo.  From the beginning, this seemed like a cruel way to go about things, although I get it in theory.  The drug company wanted to make sure that any improvements were really due to the drug.  That being said, imagine how hard it would be for the child and their parents if they improved and then regressed again (ie, went to placebo).  Apparently the drug company had enough instances of this occurring that they decided to stop this portion of the study and progress to all children receiving the medication at all times.  And they decided to do this suddenly- last Friday.  And told the study coordinators at all facilities that they must bring in all subjects this week and progress them.  This meant a two hour visit for each patient- blood work, urine test, ekg, IQ test, parent questionnaires, the works.  You can imagine their stress over trying to get everyone in during the required time frame.

I told the study nurse that I could NOT miss any work this week after missing already last week for this study.  So she made the appt for 5:30 pm today.  I cancelled Jack's usual OT appointment and arranged for John to pick Nathan up from Cisco Center and take him to his OT appt and we were good to go, or so I thought. 

At about 2:30 this afternoon I received a call from the nurse who stated that because they were seeing every single study patient this week they unexpectedly ran out of the medication.  Could we please come on July 3rd after all?  Well, by this time, I had agreed to cover for my coworker on the 3rd, so now I was stressed about that.  So I found someone to cover both of our caseloads for about 2 hours that day, phew.  Then I called to try and rebook Jack's OT appointment for this evening but they had already filled the spot.  Well crap.  At least I got to pick Nate up from Cisco Center after all.  Jack and I sat there leisurely watching the "food portion" of the afternoon, where the caregivers work on making the children request and try new foods in exchange for a few bites of their favorite food.  We stayed for a good half hour, until about 4:45.  I got the boys into the car and like all of us ridiculously connected people, checked my phone.  Voice mail from Children's.  Sigh.  They got more medication, can we please come after all- like, now?  Well, our appt was at 5:30, in DC, and it was rush hour, plus, now I had Nathan and John wasn't going to make it back to our house until about 5:15 with traffic....however I decided that the acrobatics of managing all of this were still better than the alternative (going on the 3rd).  So I got the kids food at a drive thru, sat in our driveway and fed them, and when John pulled in to the driveway thrust Nathan at him and headed out for Children's.  We made it by 6:10.  I am pretty proud of that time.  Unfortunately, phlebotomy leaves for the day at 6, so the psychiatrist drew Jack's blood- yep, you read that correctly.  Two sticks (not bad considering how infrequently she likely does this) and a HUGE hematoma.  I will say this, it's times like these when I realize that we really are raising a very nice little boy.  Poor Jack was trying to think of the meanest, most shocking thing he could say when they were doing the second stick and the worst he could come up with was "nah nah nah nah you can't get me!".  We were all dying trying not to laugh.  And he laid perfectly still for his ekg too, only needed one attempt which is pretty darned good for a little kid.  AND he sat for an IQ test- all bets are off on how well he did at almost 8pm, but still, he did it.

So everything is taken care of, and we don't have to go back for a few weeks now (supposedly).  This study has turned into a real pain in the bleep.  I feel like we have been to Children's pretty much every week, which is NOT the frequency that was portrayed to us in the beginning.  It would be easier to tolerate if I was seeing big changes from the medication, but I am really not seeing any difference at all.  He did, however, weight 19.6 kg today, so he only needs to gain another 0.4kg and then they can double his dose.  So I am hanging on to that.  I was told tonight that we only have 3 more appts that are every other week, and then it will only be every 6 weeks.  I. am. ready.

No comments:

Post a Comment