We’re home safe and sound. And here is what I can tell you- NIH is an AMAZING facility, the neurologist rocks, the sleep study technician was fantastic, and I am ready to drop. It was a long process, and it may not be over but I’ll get to that.
First of all, everything happened when they said it would happen. Within 10 minutes, no exaggeration. After we arrived on Saturday afternoon, we hung out in Nate’s room for a bit, the neurologist came in to examine him and ask some questions and then she walked us up to the sleep lab. Where she proceeded to hold the portable DVD player at every angle imaginable so that Nate could always see it while the leads were being placed. The lead placement was a dream. This technician works with all of the kids that come to NIH with autism, and has his own technique. They usually “dry” the glue they use to stick the leads onto the head with something that blows air at the kids- not a brilliant plan when a child has autism. A big no no actually. So instead, he does the gluing and then wraps the child’s head tightly and they stay on just as well if not better. So that cut down on one potential trauma. We did not have to use the papoose restraint. Nathan cried less than 5 minutes during the hour and a half placement. It could not have gone better. He was even falling asleep at times. Then we took him into the room for the sleep study and BOING, he got a second wind. We turned the lights out at about 9 and he didn’t fall asleep until about 11:30, which is very unusual for him, but given the circumstances I am sure that was within the norm. He slept until about 7 and the tech said they got some “very good data” whatever the heck that means. He unhooked the leads from the machine and wrapped them securely in Nate’s “cap”- he had quite the tail, somehow he managed to make it look ridiculously cute.
We had the whole day to ourselves. I had really doubted the whole idea of playing with all of these leads pasted to his head, but we actually had a really awesome day. I got to play with my kid all day long, no laundry, no cleaning, no cooking, just me and Nate. He was deliriously happy, and I heard quite a few words including “I see fish”, when we visited a huge fish tank in the admissions area. I ran the boy ragged, or so I thought, and he had no nap. He didn’t bother with the leads much at all, to be honest, the only time he seemed to notice them was when we went back to his room and he wasn’t busy anymore.
Last night, oh last night.
Let me qualify this story- I firmly believe that some gluten or dairy slipped into Nate’s diet despite the fact that his doctor put the orders in appropriately. Or something just flat out upset his stomach. It was gasapalooza in the sleep lab last night, holy moly, that poor kid. When we went back upstairs, and the tech looked at Nate’s leads after laughing a bit when I told him it looked to me like just two were loose. I was right. He told me that this was the most intact he had seen anyone’s leads in a very long time, if ever. Just the leads behind his ears, which were itchy as heck. He fixed those leads, rewrapped his head and we went to go to bed.
I should explain that because this was a sleep study and not just an EEG there were other leads besides the ones on his head. Arm and leg leads to measure movement, an O2 saturation probe, and the tech initially tried to put that little device under his nose to measure his breathing. Not likely for my little thumb sucker. That lasted about a minute. He fell asleep right at 8pm. Hooray, my plan worked! I watched some Say Yes to the Dress on Netflix, and then drifted off. Until about midnight, when Nate woke up- and stayed up- until 5:30. He was just thrashing around in the bed with what I believe to be stomach pain, but in the meantime, the leads on his legs were driving him nuts. He wanted continuous deep pressure to his legs and feet, it was the only thing that comforted him. To the point that my hands are literally sore from pressing today. At 5:30 the tech came in to tell me that he was terminating the study because even if Nate fell asleep again they wouldn’t be able to get enough data to make the study adequate. And no more than 5 minutes after he left, Nate of course conked out.
When we woke up Nate had the following procedures in quick succession- a daytime EEG, blood draw and EKG. He tolerated everything beautifully, which with the degree of sleep deprivation he had is pretty amazing. The only low point came when the daytime technician started to take Nate’s leads off. I was warned that he could have a little skin irritation from the leads, but according to the neurologist, Nate had a pretty severe reaction. He has blisters on his little forehead. The suckiest part was that I had to shower him immediately to get as much glue out of his hair as possible. He was screaming bloody murder because the shampoo stung his forehead so badly. I felt terrible.
After all of this, we were free to go. The question remains- was this study enough? And the neurologist could not answer that. Normally in pediatrics they need the two nights. As she said, our experience with Nate is just one example of why the “norm” cannot apply to a child with autism. They usually need two nights because typically the first night is not very accurate, as the child is in a strange place, scared etc. Usually the second night is when the best data is obtained. Nate did the opposite. So the neurologist has to talk to the IRB (research board) and they have to decide how they want to approach this. They may accept what they have, or….we may have to repeat the whole study. Not just one night, but two, because if they are not accepting it because we don’t have the second night, we have to do a first and then second night again in order to achieve that. And if the government shuts down at midnight, we may not have a determination for a while.
At least I know that they won’t just kick us out of the study, but boy I don’t want to do that again for a while. We already have to do another at 6 mos. and at a year to check for changes, so the prospect of adding a 4th sleep study, no matter how well he tolerates it, is a bit daunting. OK, time to pass the heck out.
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