Another Visit to NIH, Another Sleepless Night- Continuing the Aricept Study

It’s been a busy week!  This past Friday was Nate’s one year study visit at NIH.  This was follow up for the trial of aricept that he was on for 6 months- from last October until this past April.  They will continue to follow him through next April.  This meant that we had to go through the full battery of tests…again. All the assessments, 5 paper surveys for me, a two hour interview, physical exam and tests, and the sleep study.  I dread these appointments for weeks.  I just hate them.  The mornings are not so horrible- it’s nice to have some one on one time with Nate- in the car, between tests, at lunch.  I consider it a bit of special time- we both have such jam packed schedules that it’s a rarity to have just mommy and Natey time, so that is nice.  The sleep study?  It’s the bane of my and Nate’s existence at this point- it SUCKS the first time, and the third time?  Yeah, it really sucks.

I think I may have to call our most recent visit the worst one to date.  It started with in insane day at work the day before, getting ready to take the day “off” HA!  I was working on cases after the kids went to bed, and that’s really unusual fortunately.  Just one of those days.

The next morning was nothing short of a circus.  I mean seriously, cue the music.  We actually left just barely in time to get to NIH- those of you who know me personally know that this is unheard of for me- I am chronically early.  It’s just me.  So OF COURSE we hit ridiculous traffic going to DC- it’s always ridiculous but on Friday morning it took me 40 minutes just to go down a ramp to get onto a highway (95 for the locals).  So I called to let the staff know we would be late- this appointment involves approximately 10 people- MD’s, PhDs, child therapists, and research assistants.  So yeah, I felt like crap about that.  Luckily, the DC beltway was better, and I pulled into NIH a mere 15 minutes late- not bad.  Now back at our first visit a year ago, both Nate and I had to bring birth certificates and social security cards and go through preliminary background checks so that we could get long term id’s to get on campus.  If you don’t have a long term id, when you pull onto campus you have to go to a security building, your car is searched, you have to get out of the car, go inside, present your multiple forms of id and go through a metal detector.  Then they will allow you onto campus.  Anyway, I pull up to swipe my id, and it beeps.  Hmmm that’s odd, I try again- beep.  I called the security guard over and he told me that my long term id expired on 9/30/14 (it was October 3^rd).  Fanfreakingtastic.  I would be relegated to multiple searches now.  So I had to back out of the entrance (there are separate entrances for guests) and into the other entrance to begin a process that usually takes about 30 minutes. 

When I pulled up, they asked for my driver’s license and social security card- no problem.  Then they asked for Nate’s id.  Well of course I didn’t have it, because he had a long term id to get on campus.  They started to tell me that they couldn’t let us through.  I threw as much of a hissy fit as I was brave enough to throw while surrounded by security, metal detectors, and I am sure video cameras.  I had them call the clinical center to confirm that Nate was in fact the patient and had to come inside.  After they did this, they were extremely solicitous- they scanned me outside so I wouldn’t have to get Nate out of the car- scanned him (which just cracks me up), searched the car, and then provided me with a paper pass to get on campus.  Phew.  The security guard told me to just wait for the car in front of me to pull through and I would be all set.  So we sat, and sat.  After about 5 minutes I put down my window and asked the guard if there was an issue, so he went to check.  Turns out, the car in front of us had broken down!!! You just can’t make this stuff up!  So they moved some cones, had me back up (again) and let me in a different way.  At this point I was laughing like a hyena.

All of that before the actual appointment- not a great sign - but I told myself that all the bad stuff had now already happened so we were all set.

And honestly, the appointment was pretty uneventful.  Just the usual feelings of despair that come with confirming for the fifty thousandth time that your child is in fact profoundly delayed and that thousands of hours of therapy have not, in fact, helped very much.  That pretty well sucks every time, it’s a given.  That being said, Nate was much more communicative with the evaluators- maybe not in the way they were hoping for, but his expressions were killing them (and me)- soooo funny.  They brought me in for one of the evaluations, I was to just sit in the corner and “blend in”.  Nate was wrapped around my legs which made that a tad difficult.  At one point they started calling his name (to see how many times they would have to do it before he turned to them- this is a risky game- I have gotten as high as 40 when he really wants to ignore me) they tried 5 times and then asked me to try.  I called his name once and he whipped his head around.  They tried expressing happiness through their facial expressions (to see if he would share in their enjoyment) and he looked at them like they were on crack, I did the same and had him laughing within seconds.  They pointed at pretend objects in the distance to see if he would follow their fingers, he didn’t.  They asked me to do the same- he did nothing- hey you can’t win them all!  We did our usual 15 minute “play on demand” session in the room while everyone sat outside the two sided mirror and watched.  Just for kicks I brought the book “Brown Bear, Brown Bear” and asked if I could sub it for “I love you through and through”.  I was told that would go against the standard protocol.  OK, that’s fine.  But then I go in the room and they have replaced the boring pots and pans with ones that hiss and making boiling sounds- how fair is THAT?  I bet the kids like those better, just like Nate would have liked my book better.  Oh well.  We ended up staring at the mirror with him yelling jump, and me lifting him up to see himself over and over and over again.  Hey, it was reciprocal interaction. 

After this, we had a break for lunch, then did inpatient registration, then went to the registrar for meal reimbursement and then went to get our new long term ids.  Then we went to his inpatient room so that the research neurologist could come do preliminary tests and a physical exam.  Now, anyone who has ever been admitted to the hospital (or has admitted someone) knows that the process is a flurry of activity- height, weight, vitals, medical history given to a nurse and then the doctor, menu explanations, discussion of the plan of care, and last time we were so lucky as to have the catholic chaplain drop in to discuss the blessings that autism can bring (yes that was sarcasm).  It did seriously happen though- for a good 40 minutes- and you can’t be rude, because it’s the chaplain.  Anyway, by the time the doctor came in to examine Nate he had been poked and prodded a bunch already, and through all of the tests from the morning- he was done.  She tried to listen to his heart and lungs and he repeatedly threw himself on the ground, so I did what I always do at his pediatrician’s office.  I put him on my lap facing me so she could listen on his back.  And he bit my chest- HARD.  This is about the fourth time he has done this to me recently- he has also done it to his dad, his teacher and my mother, and a few staff members at Cisco Center.  Usually it revolves around making him sit on the potty.  Here he was clearly frustrated with all the activity and his lack of control of the situation- but he broke the skin- on my chest – yow!!!

Of course after that happened the doctor was very firm that when we placed the EEG electrodes we would need to put him in the papoose (read:  straight jacket) for safety reasons.  I was in no position to argue since I was bleeding.  We were transferred upstairs to the neuro floor for the lead placement and sleep study.  The lead placement took over an hour as usual and Nate was pretty much hysterical the whole time- hiccupping and everything.  A few times he almost fell asleep.  After the placement he is usually so happy because it is done- but this time he had a complete meltdown- it took a long time to calm him down, but I did, we had dinner and then it was time for bed.  He did great when it came to falling asleep- he fell asleep a little after 8- it lulled me into a false sense of security.  And then he woke up at 9:30pm.  And stayed up- for a long time.  I didn’t look at my watch but figured he fell back asleep at around 1 or 1:30- in the morning the sleep study tech told me it was 3:30. He woke up for the day around 5:30am.  Yeah that sucked.  He just thrashed all night long- it was the darned leg leads again.  When he goes through his sleep/wake cycles and moves around he gets really upset when he feels something on his legs.  I reiterated this to the neurologist on Saturday morning and she assured me that “next time” we can leave those off.

beautiful face :-)

Which brings me to my dilemma- next time.  I just don’t know that it’s worth putting Nate (and me) through all of this again.  I don’t have to decide until next April, so it’s not really a pressing issue- but it is a difficult decision.  Is this benefitting Nate at this point?  It is reassuring to have him assessed by their team on a regular basis, but I don’t feel like they are getting any great data when they don’t get a long period of sleep from him.  And he is out of it for days afterward.  I have to decide if it’s in his best interest to go back- which I think it probably is just for the assessments if nothing else- and if I am willing to go through this all over again.  Honestly that part doesn’t much matter, as it’s just not about me.  The other aspect of the decision is honoring our commitment.  We signed consents when we began the study, and I knew what we were getting ourselves into.  But of course part of the consent states that one can quit the study at any time.  One thing I am not is a quitter- we have given them ¾ of the data they need for the study.  Am I really going to say “nah, never mind” about that last bit of information we signed up to provide?  When I know that they can give us very detailed, independent developmental assessments that can assist with Nathan’s transition to his “kindergarten equivalent” next year?  It’s not likely.  We entered this study for two reasons- first in the hopes that the actual drug in the trial would help him, and second, to provide Nathan access to some of the best qualified professionals in the area.   I think that we need to follow through.  But I am allowed to whine and say I don’t want to, right? 

We made it home.  We slept all of Saturday afternoon, woke up to eat, and went right back to bed.  We survived.  Until next time NIH!