Ok I am finally ready to talk about it. Our very long and intense NIH visit last
Friday. I knew going in that this would
be the most intense appointment procedure-wise we have ever had. Obviously our initial appointments after
diagnosis were more emotionally exhausting, but this was a 24 hour, chock full
appointment. The primary investigator
offered it this way so that we didn’t have to make two trips, and I didn’t have
to take two days from work, but I do not know that I would do it again.
We did the following:
4 hours of developmental testing, about 2 hours of me answering
behavioral questions, an ecg, physical exam, nasal swab, rectal swab, eeg
electrode placement, awake eeg, more physical exams, inpatient admission, sleep
study (I use that term loosely), and morning blood draw. We got there at 9am on Friday and left at 9am
on Saturday. There was little to no
downtime.
Any parent who has been through developmental testing with
their autistic child at any point (so everyone) knows what it’s like. But let me try to explain for those of you
who have typically developing kiddos.
Your kids pick up words, they communicate, they draw, they play with
toys, and they learn games. Nathan does
not do any of these things, at least not without major pushing (and
shoving). So when he starts saying “bye
bye”, even though I have to tell him to say it each and every time, it is
beyond HUGE. It is earthshattering and
the highlight of my year. When he turns
his head after I call his name, it is major improvement- to us. Unfortunately, there are no developmental
tests that convey this. And him turning
his head to me somewhat more frequently after fewer prompts, really doesn’t
mean much to these evaluators. So no
matter how good I feel about Nate’s “progress”, which for him truly is huge
progress, it is not going to be big to those we encounter in these tests. I always, no matter how prepared I feel, come
out of these things feeling deflated.
And Friday was worse than usual- Nate was just not himself, he had been
coughing and sneezing quite a bit, which I let them know about in advance, and
was just acting listless- which I also told them. One of the “tests” we have to do involves us “playing”
for 15 minutes. Yes this is a test. And it would be nice if they would at least
swap the board books out once in a while- getting tired of “I love you through
and through”. Just saying. Meanwhile, Nate spent a good portion of these
15 minutes lying on his back putting his fingers under the door. AKA, he would NOT be engaged in “productive
play”. Sorry folks. At that point I didn’t even have it in me to
chase him around with the foam blocks or shape sorter. After he kicked them at me the first 3 times,
I decided to wiggle my fingers under the door with him. Hey, it was interaction, he found it quite
amusing. It’s the best we could do
Friday.
The last time we did all of these assessments, this was the
end of our day. We came back another day
to do all of the physical testing and the sleep study. One major change is that the sleep study is
only one night instead of two this time.
I guess they proposed this change to the research board after Nate’s
major issues the second night last time- he is only #7 in this study, that’s
the theory I am working with anyway.
That was the major reason why we thought it might be ok to do this all
at once. I don’t know if we made the
right decision….I have 6 months before we need to do it again, so I will have
to think on it.
By the time we got to all of the physical stuff, we were
both just spent. Nate didn’t even move
when they did his ecg, didn’t even flinch until mommy took off the
electrodes. We got about an hour of
downtime, and I took him to a little playground they had outside of the
pediatric unit and as any good autism parent would, I let him swing the entire
time. I hoped it would calm him for the
task ahead. When we got back to the
room, we were informed that because of his cough and runny nose, he had to have
a nasal swab- there is only one pediatric unit at NIH and there are
immunocompromised patients there- something I understand all too well. They swabbed Nate, and then he had to wear a
mask in the hallways to protect others.
We then went upstairs to the sleep study lab for electrode
placement. Rajiv is the tech they use
for the kiddos, and I will admit that he is very patient and good with
them. He remembered and loved Nate, as
he did beautifully for the first placement.
It requires the kids having to sit very still for over an hour (best
case scenario) and also tolerate having their head not only touched constantly,
but also having basically a smelly blow dryer held over each electrode after
placement to help it dry. Great, head
touching and high pitched sound for a child with autism- I am just grateful it
wasn’t Jack; he would not have tolerated this AT ALL. 
The first time Nate had this done, back in November, he sat
on my lap and watched Happy Feet. He
whined and swatted at Rajiv some, but overall, I was told that it was a
dream. And last Friday “according to
them” went pretty well too, as Rajiv didn’t get bitten, spit on, etc. To me it was extremely traumatic. I almost cried, and I consider myself pretty tough. Nate was just not
having it last Friday. He was fighting
the placement with everything he had, and after about 90 minutes of holding him
down (me), the doctor finally suggested the papoose. The only way I would agree to this was if we
kept his hands out- I wanted to hold his hands- the board and Velcro straps
still kept him from arching, flailing and kicking, but I didn’t want it to be
completely dehumanizing for him- I just couldn’t do it. I have rarely seen Nate hiccup from crying so
hard, but I did last Friday. By the time
we finished, his eyes were rolling back in his head, his little body was
desperate to just go to sleep and make this end. But they wanted me to keep him awake for
another two hours, until “bedtime”. So I
did- he had dinner, he played with me; he was in pretty good spirits. Then we went to bed.
Nate fell asleep beautifully at about 9:30pm as they came to
get him late (grrrr). And then he woke
up at 2:30am and never went back to sleep.
I tried everything, and he did doze off and on, but he had electrodes at
his eye creases and by his facial muscles, and movement monitors on his legs,
which he tried to kick off with the effort of an Olympic athlete. At 4:30, Rajiv came in and said good morning,
which obviously confused me. The only
thing I can figure is that he has been told that if the child goes two hours
without sleeping he can end the study early and go home? Of course, before he left, the electrodes had
to come off. So what did we do at 4:30
am? That’s right, we made Nate sit still
AGAIN and deal with having adhesive remover rubbed all over his head and sticky
electrodes pulling his hair. It did not
go well. Then we were shuffled back down
to our inpatient room, where we had to sit until 8am to await his blood
draw. Which they had to attempt multiple
times. Then we left and went home. Nate and I slept until about 2 pm Saturday
afternoon. 
I got a call from the doctor yesterday. Nate’s nasal swab was positive for rhinovirus
and/or enterovirus. Which explains so
much of Friday. It also explains why I
have felt like death for the past few days.
More concerning is that Nate’s ecg showed some nonspecific
abnormalities, although the doctor said this could be related to the
illness. Nate has to have a repeat ecg
when well enough- hopefully tomorrow as this mama is not comfortable
waiting.
Needless to say, this was not a pleasant experience for me,
and especially not for Nate. His
medication trial is over now. They will
follow his development for the next year.
We are not restricted on treatments for Nate at this point- which is a
good thing, since we are seeing someone new….Thursday. Nope, I don’t mess around…
