NIH Sleep Study #1

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 4^th sleep study, no matter how well he tolerates it, is a bit daunting.  OK, time to pass the heck out.

Gearing Up...

Do you remember that obsessive, unprepared feeling you had the first time you were taking a trip with your baby as a new parent?  Now, multiply that feeling x10.  That’s where I am right now, and that’s saying something because I was one of the most prepared moms out there the first time we took Jack out of town.  Zip lock bags of all favorite snacks, every baby product known to mankind, multiple strollers, pack and play, well you all know. 

But what do you take for a 3 day stay in the hospital in which your autistic toddler is going to be absolutely miserable, likely sleep-deprived, and continuously wanting to pull approximately 30 electrodes off of his body?  Not to mention the fact that since he’s not sick (thank God) he is not likely to want to sit still- at all.  Seriously.  What? 

I got an “itinerary” from the study coordinator today and discovered that we will be transferred to another room at night time for the sleep study and will have a technician hanging out with us all night.  This further complicates my packing list, as I will have to choose a small number of things to carry with us each night when we trek over to the lab.  They have put in for a gluten/casein free diet for Nate, but I very seriously doubt he will eat much of what they give him.  The boy has a crazy picky palate, which means that I really need to pack enough food for three days. 

And I need to keep his hands and mind busy.  A ream of paper would likely accomplish this since he loves to shred paper and dangle it in front of his face right now.  And I will be bringing paper with us.  The boy can stim away as much as he needs to this weekend, I have no plans to redirect that behavior.  It gives him comfort.

I found several new “fidgets” on amazon which came today.  One is a “glitter wand” (clear plastic wand with glitter in water that moves back and forth), one is a “water wigglie” which you can squeeze- I think he will like that.  And then there are the old standbys, barrel of monkeys (this boy can make a chain longer than him!), and some favorite movies, especially “Happy Feet”, a laptop and the IPAD. 

I am bringing a book- hahahahahahahahaha

Not likely mommy.

Say some prayers for both of us, but especially Nathan.  Pray for no seizure activity, decreased REM cycle length (I think), and a smooth process for both of us.  God I love this little boy, and I just hope that all of this will lead to something positive for him. 

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. 

I Think He Means It

I am getting just a wee bit giddy.  Apparently Nate intends to continue this new communication trend.  Daddy was going to give him his bath tonight so I could vacuum and mop before it got too late.  We told him "time to go up for bath".  John was standing at the top of the steps beckoning to him.  He turned around, walked to the couch, grabbed both of my hands and pulled me up and proceeded to steer me to the stairs....

Driving Without a License

OK, I can’t hold it in any longer.  Nate is doing really well the past week or two.  Not too many “new” words, but the ones he uses, he is definitely using much more consistently.  We are much more easily able to discern what he wants, although it’s still a challenge at times.

Here is the funniest and most significant thing that has changed.  Nate has been pulling us out of our chairs to get his cup or food for quite a while.  This weekend has been somewhat challenging for him on multiple fronts.  First of all, we have been on the go quite a bit, which is always unsettling to him.  But more importantly, the places we have gone and the people we have seen are familiar to him because they are the places where I take him and people he sees when I leave.  Friday night we went to Cisco Center for a little get together.  Saturday we went to my parents, where I left him for a sleep over last month, and then we headed to a birthday party which the Director (whoot) of Cisco Center was also attending.  He was not taking any chances- kid was glued to my side at each place.  It was really cute and endearing after the crying jags that occurred when we arrived at each place.  When we were at Cisco Center he was chasing me everywhere.  But yesterday he took a different, really awesome approach. 

He drove me.

Not a joke, it’s like I was his boat and my arm was his rudder.  Especially at my parent’s house.  If I wasn’t where he wanted me to be, he grabbed my hand and steered me in that direction.  He pulled me to the garage stairs and then stood behind me and pushed my legs until I walked up them.  He pulled me to the family room, in front of the couch, and then pushed my knees until I sat down.  At lunch he kept grabbing my hand and putting it on the dish that contained the food that he wanted.  He acted similarly at the party as well.  This is the first time he has done this.  He was making the effort to communicate with me, and for the most part it was not food based (which is always his greatest motivator).  He was letting me know where he wanted me to be, and more importantly he was expressing his needs.  I wasn’t wondering if he was truly content with what we were doing, he was letting me know- very decisively. 

It has even continued some at home today, although of course this is a much more comfortable setting for him.  He and I were eating lunch and John walked into the room.  All I had given Nate was a “crummy sandwich” and he was clearly not pleased about this.  But he was strapped into his booster and unable to lead anyone to what he wanted.  So instead, he started pushing John away from him and saying “go”.  Then, “I want chips, go”.  He told John to go get him chips.

We are seeing progress.  Actual, tangible progress.

A Small Step for Nathan= An Awesome Day for Mommy

I haven't been mentioning Nate's "progress" much lately.  I don't want to jinx myself.  So I am still not going to go into much detail about what we are seeing or not seeing.  Instead I am going to tell you a happy little story:

When Nate was about 19 months old and Infants and Toddlers first came to our home for the initial therapy- the therapist was able to ellicit one word from him- she would say "ready, set", and Nate would say "go!".  Then he stopped.  Then he started.  Then he stopped.  He has done this off and on for the last two years, but it's been about 6 months since I heard it last.

I was feeling inspired to push him a bit this morning while we were outside waiting for his bus.  So I started saying this each time he was "gearing up" to run a lap. I dragged out the period between set and go a little more each time, and it did seem like he was pausing to wait for the word before he started running again.  So the next time we did it, I dropped "go" just to see what would happen.  Did he say it?  He sure did!  This alone makes me very happy, it's always nice to see something click, especially after such a lapse.  But it gets better; as we went on, he kept saying it, but he LOOKED AT ME like "lady are ya gonna say it?" each time before he finally said it.  He was totally checking in with me, and clearly he totally got the concept because he never ran before the word "go".  I know all the parents with nonverbal kids out there are cheering right now- in fact I think I hear them....

Short but very sweet.  Happy Friday!

My Reluctant Fish

When I applied for grants over the summer, one of the services I applied for was special needs swimming lessons for Jack.  At first glance it may seem as though he would be fine in regular swim lessons, however we have tried that and let's just say it didn't go so well. 

The group nature of the activity was not a good fit, and honestly even though he is upright, running and walking, he actually has some significant gross and fine motor deficits.  Along with insecurity- not knowing where his body is in space.  I wanted him to have at least a good 6 week session or two of this (one on one lessons with a specialized instructor) and then maybe we can move back to regular lessons.  However, these lessons are expensive, so that is why I applied some of our funding to this area. 

So you can imagine my dismay when before the 4^th lesson last week, Jack was telling me he didn’t want to go back.  I was that mom “oh no, you WILL go back”.  I may not be paying out of pocket for the lessons, but believe me, I did the work to get that funding, and it will be utilized.  Last week he got his wish because when he arrived at his lesson there was a code brown and the pool had to be cleaned.  His lesson was cancelled.  Well, he started in again today after school, telling me he didn’t want to go, didn’t want to put his face in, go under, etc.  He has done this for a long time when he is at the regular pool so I was a bit perplexed.  So I asked him why.  His answer?  He can’t talk when he’s under water.  This from the boy who is literally incapable of NOT talking during any given moment of the day.  Clearly this compulsion is stronger than I thought if the idea of refraining from talking for a few minutes gives him this kind of anxiety and dread. 

This is where the brainteaser parenting comes into play.  Everything needs to be turned into an “opportunity” surrounding one of his areas of interest.  Not to brag, but I’m a pro.  I told him that if he didn’t learn how to go under water and speak “bubble language” that he would never be able to communicate with all of the animals in the ocean.  If you recall, about a year ago he was all about whales, crabs, lobsters, hermit crabs and sharks.  He asked if he would be able to say “real words” while he was under, so I demonstrated a very, umm, odd “hwelllo” in bubble talk.   He seemed satisfied with this answer, but was still reluctant.  His instructor also wanted him to start wearing goggles this week since he will be going under quite a bit more, and he was vehemently opposed to this.  Until I told him they were fighter pilot goggles. Then he wouldn’t take them off- score!

He did an absolutely AWESOME job at his lesson!  He went under, jumped in with and without pads, practiced some basic strokes and floated on his back (ok well only for a second).  I had told his instructor at the beginning of his lesson about the going under water thing and the pilot goggles thing, so she was able to keep that going.  At the end of the lesson she told me that Jack was making some funny sounds when he went under and was blowing bubbles.  I repeated my ridiculous hello to her and said “like that??”  She said, yes, exactly like that!  The boy is determined to speak no matter where he is. 

 

And no the irony of that situation is not lost on me.  Because while he was doing this, I was in the viewing area with Nate toiling to get him to say water- and he DID say it during bath time tonight.  I swear to God there are times that I think he sits there and bides his time, and then decides, oh all right, I’ll throw the old girl a bone and comes out with it “water”.  But only once- mommy has to work for those words.  Maybe this is a load of crap- but if you saw the smug expression on my sweet boy’s face when this is happening, you might just agree with me.

Someone wanted to join in the fun....