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!

Big Happenings on the Horizon....

Ah assessments.  ASS essments.  How I loathe them.  How Nathan loathes them.  That came across loud and clear today- at least to me. 

The day did not start out swimmingly anyway.  Nate woke up at 4:30 am and demanded continuous deep pressure on his arms and legs until about 6am when he fell asleep again and I got up to get dressed.  I woke him up, threw on his clothes and put him in the car for his breakfast.  It took us over two hours to get to NIH- beltway traffic never ceases to amaze me.  I will say that the NIH security guys were very accommodating- they did not make me get Nate out of the car, instead they used the “wand” on both of us and took my driver’s license in to get my visitor id for me.  That was really nice.  Still we ended up being about 20 minutes late- I am not fond of being late- I am chronically early.  Oh well.

The testing they did today we have been through at least, hmm, maybe 6 times before with Nate?  Needless to say, it was not very fun for any of us.  I ended up behind one of those mirrored windows that you can watch through, observing Nate fighting everything he was supposed to do tooth and nail.  I cannot count how many times he flung the blocks he was supposed to stack to the floor and yelled “nah”, or swatted at the tester’s hand.  It’s frustrating as his mom to be on the other side of the glass.  I was silently screaming, “wait, he can do that!”  I get that that’s not the point.  They don’t really give a blippity blip about what he actually can do; they care about what they can get him to do.  So instead of torturing myself, I went into the anteroom, where I was confronted by the head of neurology and a child psychiatrist who wanted to discuss the sleep study with me and see when we might be available.  They also wanted to do consents for this, and listening to what my upcoming weekend will consist of was not so pleasant.  Yep, we are doing it this weekend- might as well get it over with. 

We will be admitted to the inpatient unit at NIH on Saturday at about 5pm.  The technician, the research assistant, the nurse and the neurologist will be there for the “lead placement”.  And this is going to suck- big time.  I am well aware of that, and dreading it like the plague.  Nate will have electrodes glued to his scalp, as well as multiple other leads placed.  They have a contraption called a “papoose” that they prefer to use for lead placement because little ones fight so hard. 

 

Another family’s experience (except they were outpatient)

http://theseversons.net/2011/08/dos-donts-surviving-childs-ambulatory-eeg/

I am on the fence about this.  It looks terrible to me.  I don’t wanna, and I’m sure Nate doesn’t wanna either.  The thing is- which is worse- being restrained and getting it over with relatively quickly or trying to hold him still myself and possibly failing and having the process be much more painful.  I am trying to comfort myself with the thought that Nate loves his weighted blanket, and I just bought him a compression vest for God’s sake.  It’s possible that the sensation of being squeezed all over may be comforting?  Well, it’s possible anyway, let’s leave it at that.

The leads will need to remain in place for 48 hours. 

Yes, that’s right, 48 hours.  This with the child who wiggled his way out of his car seat straps twice on the way to NIH today, causing me to pull over, fix the straps and firmly give him a “no, no”.  He laughed.  The neurologist today was all sunshine and flowers- we have play areas inside, you can take him to the playground, the pediatric “house” has a dinner Sunday night.  Lovely.  I pulled the research assistant aside and asked her if we can really do these things during the daytime.  Her response was “technically yes, but once he goes for those leads, you have less than 5 seconds to grab him and stop him”.  Awesome.  And that will be my full time job on Sunday.  If he pulls them off, the EEG technician will be called in (from home, on the weekend) to replace them.  He’s gonna LOVE us.  So say some prayers for both of us this weekend if you would.

Anyway, they finished the assessments, confirmed that it puts him at a 13-14 month age level for speech, and that gasp, he does have autism, and we were officially “qualified” for the study.  I was asked “are you okay?”  Umm, yes, he was diagnosed two years ago….I think I’ll be fine.  It was sweet really, and I appreciate that they were empathetic, but maybe they don’t know what I know.  Which is what I have said before- these assessments are worthless for kids with autism.  They can’t be compared to what a “typical” kid would be doing, because they are NOT typical kids!  These assessments cannot measure Nathan’s progress- him leading me around to what he wants, using the words that he has consistently and appropriately, or his improved eye contact.  There are no tests for these things.  But mommy knows, and mommy is very ok right now, he is on a good path.

We then signed a third set of consents, for the actual drug study.  After the sleep study is done on Monday, if there is no seizure activity Nate will undergo another battery of tests-  blood, urine, ecg, physical, etc.  If these come out ok, they actually mail the drug to our home to avoid an unnecessary trip, which is nice.  Thus, the consents needed to be signed now.  This was the “big one”.  The patient advocate, the head of the study, the nurse, psychiatrist, child psychologist, research assistant, and the pope were all there.  Just checking to see if you were paying attention. J  We went over everything and I am as comfortable as I am going to be.  All systems are go.

I am scared this time around, mainly because of the trauma that having the sleep study will likely cause for both of us.  And as usual I find myself asking if we need to do this.  The bottom line is this- even if Nate doesn’t qualify for the study, the sleep study data is invaluable, and they will give it to us.  It will tell us if he is having seizure activity or irritability, things that can and should be treated.  If he does qualify for the study, the medication might help him, and at the very least, it will help autism research move forward (if we get placebo) while Nate receives all of the testing to rule our seizures.  Why are we so intent on ruling out seizure activity?

http://www.psychologytoday.com/blog/the-autism-advocate/201308/seizures-and-autism-read-silently-seizing

http://www.autismspeaks.org/family-services/epilepsy

So yes, it is important, and yes, we need to do this.  Having an EEG from NIH is worth it. 

Did He Hear Me?

God, that is.  Because some strange things have been happening this afternoon.  And by strange, I mean good, which feels strange after my recent frustrations. About 30 minutes after I posted this morning, the pharmacy called to let me know that everything with the mitochondrial cocktail is set, they are formulating it and will send the 5 day supply shortly.  Score one for us!

Then, about 30 minutes after that, the NIH called.  I kid you not.  This is the first time they have called in the 2 years since I put Nate on the study list.  I called back and left a message, but unfortunately have not spoken with a person yet.  All I know is that she is with the neuroscience department.  Who knows if we’d even be interested.  As I stated in a previous post, I am no longer drawn to studies that provide researchers with general information about autism symptoms and progression/regression/remission.  If I had all the time in the world it would be another story, but clearly, I don’t.  I also don’t think it’s fair to Nate, or our family, to subject him to the same assessments over and over again, when they always yield the same results.  It’s depressing, it’s time consuming, and it certainly doesn’t benefit him in any way.

My requirements for study participation at this point have changed.  I will not enroll either of the boys in a study unless a) it involves pharmacological intervention that looks promising or b) it yields some new, useful information for my son.  An EEG I would do, an MRI I would do.  These procedures might explain something, and that, to me, is worth it.  Basically, even though it sounds a little selfish, there has to be something in it for us.

The timing of this call just cracked me up.  It’s likely that nothing will come of this, and even if it does I doubt it will yield “answered prayers.”  It’s nice to think that God is looking out for my son.  (S)he has given Nate quite a heavy load to carry, and he could use a break.  And mommy and daddy could too.