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Tuesday, December 20, 2011

EEG, IEP, and a Couple of Tra-la-las

(Title to be sung to the tune of "Merry Old Land of Oz", and you can thank me later if it sticks in your head)


I don't really buy into the whole "sucky Monday" mentality, but yesterday was sorta sucky, and it was definitely Monday, so to those of you who do buy into it, it was totally "a Monday" kind of day yesterday.  

Yesterday we visited Children's Hospital so that they could run an EEG on Lily.  Between last week's fainting spells and today, I had lots of back and forth exchanges with my doctor to figure out exactly what the next step should be.  

After we figured out that the step was, "have an EEG done," we went about scheduling it, and the sooner the better. . . it turned out to be yesterday.  I got all sorts of helpful ideas about how to prepare my child and how to be a good helper in the EEG room which proved totally useless because what they ended up doing was. . . strapping her down.  Ugh.  

I'm getting ahead of myself.  I told Lily all weekend that on Monday we were going to the doctor to get a special hat, and then we would go to McDonald's.  This seemed like a pretty kickass idea to my little girl, who latched right onto it, primarily on the strength of the McDonald's argument.  "First doctor, then McDonald's."  I had called ahead to the EEG tech to explain Lily and what they were likely to encounter and he assured me that they deal with thousands of children, many of whom have special needs and they were fine.  (Well, yeah, because you strap them down and leave them to cry in a room with their parents while the test runs.)

I had asked the doctor about an ambulatory test, thinking that Lily would be okay with having all that shit strapped to her head if she could at least move around, but he more or less poo-pooed it.  His response to me was that the 24 hour ambulatory test only has four leads, and the 45 minute test has 19.  The 19 leads would provide (in his explanation) much more data and allow the pediatric neurologist more to go on prior to our consult.  The tech confirmed after the testing that almost all their EEG work starts out as the 19 lead 45 minute test, which could ultimately lead to other tests depending upon what that one showed.

So Monday arrived and I told Lily, "We're going to see the doctor to try on our hat!" and she gamely finished the sentence, "And then we go to McDonald's!"

"That's right, big girl, then we'll go to McDonald's and get you chicken nuggets," I encouraged.

"And then french fries and orange drink!" she responded.

"That's right baby, then french fries and orange drink."

We got there and were probably the first people there.  It worked out pretty great to be honest, because we sat for only about 5-10 minutes before they ushered us back into the room and the crappy part began.

The technician, who was sort of a "what does bedside manner mean" kind of person, informed us upon hearing that Lily would be difficult to keep still, that she would need to be restrained, and that some parents don't agree and end the test right there.  She asked if we wanted to proceed.

Of course we did.  What choice did we have?  We wanted the results of the test.  The results required she undergo the test.  The test required she stay still. . . it was either restraints or no results.  Illogically it still sort of pissed me off that she asked the question.  I mean by that, I suppose she had to ask the question.  If she'd just  proceeded and we were all like, "What are you doing to my little girl?  We are so out of here, you horrid, horrid woman!" that would obviously have been less preferable, but asking me made me feel like I was betraying Lily.  Like it was MY decision to restrain her.  I was put into a position of having to bless her restraints.  It rankled.

She was very brave (watching Hannah MT)
The restraints essentially amounted to bed sheets wrapped around both arms, then her body.  It looked loose, and draped sort of like a blanket around her.  Lily was cool with it.  What she was not cool with were the velcro straps that went over that.  She was similarly not cool with being forced to lay down while the woman pasted probes to her forehead, moving her head this way and that as we attempted to coo and encourage Lily back to her happy place.  The iPad played a steady stream of first Barney, then High School Musical, then Hannah Montana, then her new favorite story, etc in an a rapidly increasing panicked attempt on the part of Leslie and I to get her "happy" again.  

Amidst the chaos, the woman marked Lily's forehead at measured intervals and rubbed something "to increase the sensitivity of the probes" before daubing paste on the end of each probe, covering it with gauze tape, and putting it on Lily's head.

Lily did great.  Was she happy?  No.  Was she pissed?  Quite a bit, actually, and scared to boot.  Did she do great all things considered?  Absolutely.  Because not only was she restrained with some emotionless stranger pasting shit all over her head, but she was also sleep-deprived.  Because they require the test-ee be sleepy.  They asked us to put her to bed by 10 p.m. and have her up by 5 a.m.  Lily was tired.  I'm not sure I'd have handled it that well, in her place. 

This is about when I tried to sell the "hat" idea again.  Fail.
Tired, and restrained, her head, wrapped in gauze to "hold the first row in place,"  the technician moved on to the next set of probes.  The whole set up process was done in 10 - 15 minutes.  Every time the technician spoke to Lily to reassure her, Lily got angrier.  I wanted to tell the woman to just shut up and finish.  I know she was trying to be reassuring, but essentially I think Lily's viewpoint was . . before you entered my life, I was unrestrained and nobody was pissing me off with wires pasted to my scalp. . . it's hard to blame her for not being super patient with the woman.  Lily was sprouting coiling wires from her scalp like Medusa's serpents at that point.

Strobes flashed in Lily's eyes intermittently (in an attempt to force a seizure, or check her reaction, it was explained).   Each new strobe sequence upset Lily anew until the strobe light ultimately ran its entire program, shut off, and was removed.  Lily was still pretty upset.  Before she left the room, I asked the technician how long the test would take.  She replied that it would be another 35 minutes.  I set the timer on my iPhone so we could tell when we were almost done and regaled Lily with useless "20 more minutes, baby" and "10 more minutes to go" sorts of updates.  I held the iPad (streaming Netflix) in front of her face and she quieted at last shortly after the tech left.  

She was actually relatively sedate (and clearly very tired from being so upset) before the technician re-entered the room and re-sparked Lily's righteous wrath.  But it was the last five minutes of the test.  When the test ended, the leads came off her head and out of her hair easily.  Apparently they have the option of using this paste, or actually supergluing the leads to the heads of their patients.  The really wiggly ones get the super glue treatment, so good on you, Lily!  Anyway, the leads came off her really easily and we freed her from her bed sheet straitjacket then re-restrained her with too-vigorous hugs and squeezes of encouragement and got the hell out of there as quickly as we were able.  The papers we received at the end of the test essentially said that we could expect results in a week, but I know it's Christmas this coming week and New Year's the next, and we have an appointment scheduled with the pediatric neurologist the second week of January, so I wouldn't be completely surprised to hear nothing until then.

"I happy now."
At this point she was tired, and pissed off and wondering where her goddamn McDonald's pay off was, but because the test was over so quickly (start time of 8:15 a.m. and we were out the door by 9:00 a.m) McDonald's wasn't serving her favorite nuggets yet!  We took her home, fed her some of her favorite snacks, gave her a bath (which always calms her, or if not calms, at least cheers her) and dressed her back up in jammies.  

Leslie then took her to McDonald's and she ate nuggets on the way home, and french fries when she got back and was well on her way to returning to her normal self.  We let her hang out for a while before I took her upstairs and put her to bed for a nap, lying with her and stroking her hair as her eyes fluttered shut only to snap open again..  This went on for about 15 minutes before she finally fell asleep.  She was asleep for about an hour when I went upstairs to wake her.

Not sure who's more content here
Papa (my dad) came over to watch her so that we could go to the next kick-ass event in our Monday Spectacular. . . IEP meeting!!  So after an hour, I snuck into her room and shut off her fan (which acts as her version of a white noise machine).  Her eyes snapped open and she stared widely at. . . nothing.  She must have been so deep in sleep.  She lurched around a bit, gaping, as I talked quietly to her and gathered her up into my arms to put on the potty.  She woke up enough to sit on the potty before I again scooped her up and took her downstairs to sit on her Papa's lap.  This turned out to be a win-win, since Papa's lap was warm and soft (and getting softer every day, frankly. . . ) and Lily kicks ass to snuggle with.  And since she's so stingy with her affection, Papa got a present, and Lily did too.

So she burrowed into him (for about 30 minutes until she finally got up and started moving around, he said) while we went to the IEP meeting.

Actually the IEP meeting went fine.  Nobody is mad at anyone.  They're more or less giving us everything we want them to give us. . . or can think of asking them to give us.  We have some i's to dot and some t's to cross, I suppose, but really we're very happy overall with the level of commitment the district has shown to Lily's educational needs.  Everyone is very cool and very willing and so IEP's of late have become something less of the nightmare they once were.  We were out the door about an hour after the meeting began and drove to the daycare to pick Emma up.

The EEG process sucked, but it's a means to an end.  Hopefully that end is results that allow us to appropriately treat Lily if something is wrong with her.  The IEP probably went more smoothly than expected. And the lion that roared in as Monday bleated away sheepishly.

That's how we laugh the day away in the merry old land of Oz! 

41 comments:

  1. You're an excellent writer, Jim. I could feel myself in that room with one of my own kids. I'm glad she was able to come through it without any superglue (wth!!) and that she got her chicken nuggets :-)

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  2. more comment porn! WOOHOO! Thank you!

    She loves her some nuggets. And Jingle. I'll have to blog about her newest obsession, Jingle the stuffed talking husky puppy.

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  3. You set this story up so well, I began to worry that you all would be done before McDonald's started serving nuggets...and lo and behold - it happened!

    I'm glad everything went relatively smoothly and nuggets were eventually had.

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  4. Good grief! I don't know how ya'll do it. Yeah....I do. Love. This post choked me up a bit. Thanks for sharing. Uh, I mean blogging ;)

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  5. Oh, I'm so glad that it went as well as all that, I was very worried it wouldn't.

    Good on Lily for being so very awesome under very trying circumstances!

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  6. Lily is seriously the most brave little girl ever!

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  7. Hi Jim, I just found you on Twitter which landed me on your blog. Just wanted to say: Holy shit! What a day for you all. Lily is such a trooper. My 8 y.o. daughter (who has Aspergers) would've made us all pay for weeks (we'd be deaf & bruised) if we had to do an EEG.

    I hope that you get the answers you need and the right treatment plan.
    In the meantime, you guys deserve a date night!

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  8. @Carrie - I worried a little, but I thought, "It's a hospital. . . take every duration they tell you and add an hour to it at the LEAST. But they were pretty clockwork. . . if somewhat robotic.

    @Jen - luckily the test itself was just an hour of the day. Extreme stress for her and us, but only for an hour. Then happiness again.

    @Venus - Yeah, she bounced back like a champ.

    @Robot - She is pretty brave. And spunky.

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  9. @kvetchmom - Thanks for finding me! A date night? What's that? Sounds familiar, but I can't quite place it. . .

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  10. wow... what a brave and awesome little girl! I'm so glad it went well (all things considered).. you guys are amazing troopers!

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  11. Hugs to you and your little girl. I hate having to do that stuff. But like you said, "means to an end."

    keep me posted on her progress and if you need any IEP help. With 2 kids I feel like a pro

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  12. I have to start giving blog comment love and stop blathering over on Twitter about how much I love you all. Not that the minute I get out of work & have Twitter again I'm not going to RT this, no no no.

    Lily is so brave and amazing. I love her to pieces. And thank you for sharing this with us. You're an amazing dad; Lily is so lucky to have someone like you in her corner. (And your wife, too, of course! I am not slighting her at all! You are BOTH AWESOME!)

    Also, SUPERGLUE? Seriously? Someone tried to superglue my kid I'm pretty sure I'd find a creative use for the superglue that would involve the person who attempted to get it near my child, tongue depressors, and rectal thermometers.

    It's best I never procreate.

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  13. Now I'm craving chicken nuggets...

    And a nap.

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  14. I'm really impressed that you're willing to share this in such a personal way.

    Not only is it compelling, but you really keep it from ever turning maudlin. I'm beginning to like your blog more and more.

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  15. Ahh IEPs. We go through those a lot.

    Mmm, nuggets...

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  16. As much as I hate saying this right now - this is such a great, well written post even though it sure sounds like one hell of a day...

    But you ALL handled it like champs.

    Glad Lily finally got her nuggets & a nap. Either one could make me happy at any point in the day.

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  17. What is this 9 versus 16 lead BS?!?! Seriously? My kid had the 24 hour ambulatory EEG and there were like 75 leads on him! I swear WTF?! We did have the superglue stuff because he had to keep it on for 24 hours. I'm not the only one either - There is a blogger Jessica who is also a lawyer with a son with autism and her son's EEG story is here http://theseversons.net/?s=EEG&submit.x=0&submit.y=0 He had the 24 hour EEG too. And that restraining business is horrific. You cannot do anything but try to soothe them and it's just awful. I feel so horrible for all 3 of you. Making it through is not enough. I wish they'd prepare us better for these things - it really, really sucks all the way around.

    I do hope all these efforts do give you really reliable results. I just cannot imagine how a total of 45 minutes in that room is going to give you the same data that 24 hours with a full regular sleep would give you. However, I'm not a doctor or an EEG tech so I cannot tell you anything about the reliability of that method. And if it is a valid method, I wonder why my pediatric neurologist had me go through a 24 hour one? And Jessica's? Something is very fishy here...

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  18. I'm glad you guys made it out the other end. And we just had chicken nuggets here for lunch. Great minds, huh???

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  19. WOW!!! I've had so much going on here that i got behind on what was happening THERE!! Poor Lily :(( Fainting!!!! Holy cow, how frightening!!!!!!!!
    I am so happy for her and YOU GUYS that the eeg went so well!!! Tommy's have been more like a circus lol Only one successful "hookup" so one day turned to 5 days of eeg to show NADA! At least now technology has progressed since then lol My daughter has seizures. That whole sleep deprived thing ugh! She ended up showing 9 seizures in a 22 min span. FREAKED me out because to my eyes, she was fine.. just tired! Oh you gotta keep us updated.. What a BIG girl she was!!!!!!! I always tell the nurses "your talking is making it worse.. can we just be very quiet.. it helps him cope" and thats code for STFU! lol
    That picture of her and your pops.. omg what a gorgeous picture! :D

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  20. I hate restraints. But more than that, I hate the look on my Lily's face while she's being restrained - like I've betrayed her or something. YUCK!
    Look forward to hearing what you find out. And give your sweet Lily a big squeeze from the "Texas Lily". These girls are bosses!

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  21. What is it about chicken nuggets? They seem to be the universal go-to reward for doctor visits.

    It sounds like Lily was a trooper, considering. I hope that you and your wife have recovered. I know that I would have needed sedation after all of that!

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  22. I'm glad it went well. Sam has had 5 EEGs, and the only ones that have been "calm" are the ones (2 of them) when she's actually been having a seizure so she's out of it. The others have been horrible.

    If the EEG results come back normal, but you suspect Lily is having seizures, pursue it. Sam has only had abnormal EEGs during seizures. All the others have been normal.

    Good luck!

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  23. @jaimie - She's back to her normal happy little self now! whew!

    @princess - will do! Thanks for the offer.

    @amy - Thanks for the comment love! The superglue thing washes out, or they do something with it to make it wash outable. If we have follow up EEG's I'll find out more, I'm sure.

    @flannery - Lily is no person to be around if you're looking for leftover nuggets. She's thorough.

    @lahikmajoe - Thank you!

    @WW - I never really got into nuggets when I was a kid. Then once Lily started eating them, I'd have one every so often when she was having an "off" day eating-wise. MMMmmm, way better than I remembered!

    @AW - compliments on my writing are comment porn to me. She never naps, but she needed it. It actually bled over into the evening last night. Sleeeeeepy kiddo.

    @Karen V - Maybe the difference is nothing more than it was ordered by the pediatrician vs. a pediatric neurologist. I'll ask the neurologist in January what the next step is and probably have a better understanding.

    @lizbeth - kids love nuggets. MY kid, however, will only eat them if she's in the car. If we bring them home to her? No thank you. Love the quirks!

    @rhonda - yeah, apart from the fainting thing at school that one day. . . I've never seen any sign of what I'd call a seizure. But I know nothing.

    @Bird - I will. Our newest game is Lily says, "I mad at me" (which is either, "are you mad at me?" or "I'm mad at you") to which I reply, "I'm not mad at you. . . I'm HAPPY!!" and I scoop her up and squeeze the crap out of her and she giggles and I put her down and we start over.

    @TMW - My wife didn't even cry once. Oh wait. . . maybe she did. Anyway, she was a trooper too, but Lily did great. And nuggets. . . I don't know what it is. They're good and all. . . but why are they better than any other chicken nugget? Like Tyson or whatever?

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  24. Thanks for the heads-up, Christine. We have our consult in January, so we'll have all sorts of questions to ask. Has Sam ever had the ambulatory EEG?

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  25. She had one in 2009 that I don't believe was considered ambulatory. It was in the hospital for 24 hours and we were allowed to leave the room, but only to a middle common area right outside of the room....as far as the cords would allow. It was like being in prison.

    We had doctors tell us that she wasn't having seizures because of her normal EEGs and because her seizures aren't "typical". But I always knew they were wrong. It was really frustrating.

    I should also add that I had some fainting spells when I was probably around Lily's age. It happened several times and I did have an EEG and some testing....they never found anything. It probably happened 4 or 5 times. I think what it turned out to be was I was queasy about anything having to do with eyes.

    Anyway, I really hope you guys get some answers. I know all about the frustration!

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  26. So happy to hear that you made it through! I was actually thinking about you on Monday and hoping everything went well.

    So, the question now is... if Lily gets her Chicken McNuggets for a job well done, what's daddy's treat?

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  27. @Christine - Thanks for the background. It helps to know stuff like that going into the appointment.

    @M2LM - My treat is her nap. 1 hour of quiet. That's a huge payoff.

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  28. Ah, what an awesomely brave little girl you have! All those tests are scary enough without the restraints.

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  29. She IS brave. She doesn't even jump when I say "BOO!"

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  30. I really wish these people would give kids a chance NOT to flip out before going all straight jacket. It's like, Ben gets allergy shots every week. He sits there and gets them by himself and is FINE. Yet, when I took him for his kindergarten vaccinations, they FORCED me to hold onto him and didn't believe me he would be fine sitting by himself, which then made him flip out. Sigh. If she was good all swaddled, they totally shouldn't have forced the stupid velcro. She seemed to do awesome, though, judging by those pics. And the snuggly pic is just too precious. Hopefully you get answers soon...

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  31. I think I could have fought it, but then we'd have been put in a position where we had to pin her if she got out of control, and then we wouldn't have had free hands to give her the stuff she needed/wanted in order to calm her down. . . the Netflixy and iPad appy type stuff.

    I don't disagree with you. i just think ultimately Lily needed to be held. . . one way or the other.

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  32. And to think that I have people telling me how stressed they are because they haven't bought their christmas items or complaining about baking their christmas cookies - which don't have one thing to do with Jesus's birthday mind you. I hope you get the results sooner than later. I think Lily would love the McDonald's Arch card for Christmas. God's blessings for a Merry CHristmas and a peaceful New Year.
    Ms Aweeze

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  33. Merry Christmas, Miss Aweeze!

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  34. I'm glad the test is over and that you'll have some results soon. It sounds like she did a great job! And that picture of her on your father's lap is just priceless :)

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  35. Good luck with the results, y'all.

    We've done ultrasounds and x-rays, but nothing as hard as what you and Lily did.

    How does the dentist go for her?

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  36. We've got a similar situation to Christine going on. It appears, at times, that Ted has some sort of seizure activity: it is very hard to gain his attention, his eyes are lifeless, drool will spill out of his mouth, he is uber clumsy (way more than usual - scary - even knocks his head on door jams and runs into walls). The EEG was abnormal, but not odd enough to suggest seizures. The MRI follow-up was abnormal, but really kind of just confirmed an autism dx (excessive myelination, asymetrical hippocami, blah blah blah). We meet with the dev ped next week to go on antiseizure meds, regardless of EEG results. Like Christine said, if you think there is something there, push. Good luck.

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  37. @thoughtyautie - He complained that I said he was soft and getting softer.

    @jon - we've made exactly one trip to the dentist with her. It went. . . not awesome. They knew what they were in for, but it was just get in there and see if they could see ANYTHING; A dangerous sortie behind enemy teeth sort of thing.

    There was crying and wet pants and fighting. . . and Lily hated it too. I'm super excited for the next visit.

    @Kelly - thanks! I'll push.

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  38. Replies
    1. Normal. . . but she was fidgety. . . so let's do another one!!

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  39. Lily is absolutely precious! Such a beautiful little girl. It's so heart breaking to have your baby go through things like that. We're all too familiar. :(

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    1. Thanks. Yeah, it does suck, doesn't it!

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