Tuesday, 15 April 2014

Our Latest NIH Visit- Exhausting, Traumatic- And Over

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. 
It’s just hard; trying to then explain the “progress” you have seen to the psychologist, neurologist, research assistants, pediatricians, etc.  I would sit there and say, yes he does some of that more frequently, or less frequently than previously, but then  I would give it a numerical value, which by the way sucks big time, and it would be the same.  And I would think about it and realize it was maybe just a hair different in the grand scheme of things.  The problem is, that tiny amount is everything to us right now.  It’s all we have.  And I don’t need to be reminded how little it actually is.  I know.  But I need to remain hopeful and positive.  This crap just doesn’t help that process.

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…


  1. That experience sounds like a nightmare for you and Nate. I'm so sorry you went through this.

    I've run psychology studies with typically developing little ones, that are much less involved than this (30-minute visits); we still want kids to be well-fed and well-rested. We'd really rather a sick kid stay home and get well; it's less painful for everyone and honestly gives us better data. You have the right to say no to participating in a study with a sick kid.

    Also--don't let anyone diminish Nate's growth and hard work, even if they have a lab coat and an advanced degree. Nate obviously works hard to understand the world and function well in it, and you work hard at helping him. Every victory matters, and your faith in him and acceptance of him matters even more. Professionals should be reinforcing his growth and your faith, not diminishing him in your eyes.

  2. He is so much like Sophie :) I don't even take those tests seriously anymore. I mean, come on? I know she made so much progress, for HER. She is amazing us everyday. Do I want some guy comparing her to all the stuff all typical almost-4 year Olds "should" be doing? No. She's always been on her own development schedule and I suspect always will. We have left the typical milestone charts behind us and I don't plan to revisit them anytime soon. I have 4 kids. I know what 4 year Olds "do". Sophie does her own thing and that's ok with us. She would swing for an hour too :) ecg is that for seizures? That's the big worry for me. Sophie is dodging that bullet so far but odds are so against her...