Wednesday, 25 September 2013

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)

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?

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

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