EEG Followup Fun

In case you weren't aware: Why the EEG?
In case you weren't aware: What happens during an EEG


I posted links to previous posts above, if you are reading this and saying. . . EEG followup?  What brought that on? And wanted a convenient link to the "story".


It was an ill-omened start to our trip to see the pediatric neurologist.  I got into a series of ongoing patience-related (or lack thereof) pissing contests with my wife.  Maybe that's not an omen.  Maybe that's just a shitty way to start a stressful day.  Inauspicious start?  Maybe that's the same thing.  Anyway, probably I was stressed out because I'd set up the appointment but didn't really know where I was going, and just prior to departure, Leslie hopped on the computer to check work email, while I was hoping to go over our route to the office with her (we were driving seperately).


After the initial pissing contest ended (in a tie. . . we were both equally douchebags) it was agreed that "we don't need no goddamn directions because we can just plug in the address to our respective iPhones and go!"  I put that in quotes, but she didn't actually say those exact words.


This led to another pissing contest when my wife took the lead and missed the turn her respective iPhone instructed her to take and required us to go a different route that her iPhone suggested as a backup.  It ultimately led us to an unmarked building and she then relied on my memory of the office (I had no recollection of the office) to determine whether it was the right office, motioning me to pass her in the one-lane driveway so that I could "take the lead" and get us there.  I thought we were at the right office, so I was thinking, (and this is a direct quote. . . at least in  my brain) "Why the hell am I passing you?  Park the van!"


Gestures were involved.  I'm not talking about the finger gestures you probably think I'm talking about, but the kind of angry pantomime you do when someone just cut you off and you're waving your hands wildly to indicate "I am so angry" knowing full well the person in the car ahead of you can't understand anything you're trying to convey but is getting the "I am so angry" gist of it.  Think of, "I once caught a fish thiiiiiiis big," only with more shaking involved, and you're definitely in the ballpark.  We "talked" and I explained my side of the story. . . that I had no idea where we were.

So we parked, and it was agreed that I should go ahead inside to see if this building was the "right" building.  That was our third pissing contest in which it was implied, more or less (from my perspective, of course, this is all entirely from my perspective), that I was allowing our child to be run over in the parking lot by walking away while my wife grabbed her purse, and I, more or less, responded by completely losing my shit and shouting in the middle of the doctor's parking lot, stopping just short of dropping all the eff bombs that I'd loaded into a wordless queue in my brain after the first two pissing contests.


It was fun.  Doctor's appointments can be stressful.  We're better now.


It was the right building.  So that was awesome.  And although we were about 5 minutes late, they were running about 35 minutes late, so win. . . um. . . win?  One of the bonus side-effects that an ongoing pissing contest with your spouse can create is not being really upset that you can't sit together in the waiting room and one of you needs to walk the halls with your child in order to keep her content and lessen some of the stress.  So I walked the halls with Lily, and we chatted and occasionally passed the windowed office in which Leslie waited, waving as we did so, and being alert to our "turn".


Leslie being the bigger man, apologized for taking her frustration out on me, and I apologized for dropping wordless eff bombs on her.  It was probably not my best apology work though, to be honest.


I think my frustration stemmed from:

1. Setting up every aspect of the appointment but not really having clear directions to it.
2. Not having any recollection of the office visit we'd made there 2 years prior.
3. Having to take Lily in to the appointment in the first place.
4. Stress

I think Leslie's frustration stemmed from:

1. Me setting up the appointment but not getting clear directions to it.
2. Me yelling at her while she was on the computer so we could talk about the directions.
3. Having to take Lily in to the appointment in the first place.
4. Stress

Lily, for her part, did great.  Entertained as she was by walking the halls, she suffered the weighing and measuring, the poking and prodding, and waiting in the examination room, with about as much grace as she has ever shown.  She seemed content to play with Jingle (her story-time stuffed animal buddy) for the majority of it, and only squirmed and wriggled a bit when I had to hold her on my lap so the doctor could check her reflexes.

After taking my mood out on the nurse for asking questions whose answers were located in the documentation she held in her hand, if she'd only troubled herself to look, I settled down and the doctor joined us to discuss the EEG results.  Normal.  BUT!  He recommended a "Prolonged Outpatient Video EEG" as a followup.  Why?  Because Lily had been moving around a lot during the standard EEG.

This elicited a spike of intense irritation that helplessness slowly washed away to dull anger.  Though I knew it served no purpose beyond "getting it off my chest", I said, "I asked for an EEG that would allow Lily to move around.  I explained that she was autistic and ADHD and that she'd move around a lot and I was told that was no problem; they see thousands of kids and many with similar issues."  In fact I had told them that there was no way she would sit still nor tolerate being restrained and they'd poo-pooed it.  Fuckers.

"Nineteen leads?" I asked.  

"Something like that," the doctor replied, nodding.

I suppressed another flash of irritation before I could say, "Something like that?  Or exactly that?" Because I'd been told the other reason the standard EEG was preferable to some other form of more mobile EEG was that the ambulatory EEG, for instance, only had four leads. . . four leads vs. nineteen leads meant much less data.  But this doctor wasn't the doctor who told me that in the first place, so beating him up about it was useless.

He also recommended a cardiologist consult, because fainting, in his words, "comes from either the brain or the heart" and he wanted the cardiologist to be aware of her case if the EEG led nowhere.

There followed a lot of apocryphal information that had to then be sorted out later because the doctor had no idea what he was talking about, including the following:

1. The spacious rooms at the hospital can accommodate both parents.  No, they only allow one to stay.
2. My nurse will set up the appointment and verify whether they can perform this procedure on the weekends.  No, she can't do that, actually.
3. My nurse will call the cardiologist to set up the consultation.  No, actually she's similarly unwilling to do that.

Doctors don't possess a fantastic understanding of the logistics of medicine.  They may be spectacular practitioners, but they all seem to feel that any of the shit that doesn't fall under their immediate supervision must necessarily roll downhill and their nurses will handle whatever comes their way.  They don't know what their nurses actually know, but whatever it is we want. . . the nurse or administrative assistant will take care of it for us.  Except they don't.  And by that time the doctor is on to the next patient (who he also tells the nurse will take care of that) and there's no closure to the whole, "my staff will handle your every wish" loop.  I didn't feel like fighting with the girl in front, so after getting phone numbers from her, we left.

Leslie took Lily for her Mc-Reward-ld's nuggets and fries and I drove back to the office, stopping at DiBella's to pick up a hot godfather sandwich on 'everything' bread with lettuce and tomatoes, NO onions, hot peppers, oil and provolone to go.  Now I wreak of garlic and suppressed rage, but am safe from vampire attack.

The cardiologist is going to want to see Lily.  I feel fairly certain of that.  He'll weigh her and get her height, and maybe even her blood pressure, and then he'll have a talk with us about what, if anything, he wants to do.  We'll both take a day off to do it, and fight Lily to sit down and not pee her pants and generally behave, just so we can have a conversation that could easily be done over the phone (if it weren't for that pesky height/weight requirement).  

And at the end of the next EEG and the cardiology consult, I feel fairly certain everything will still come back normal.  The most irritating thing about our "leave no stone unturned" attitude with regard to Lily is that regardless of specialty, whether it's neurology, genetics, cardiology, whatever. . . she's normal.  Just a puzzle.  

Yeah, no shit.

I wrote all this out probably better yesterday, then got some weird error.  I copied it so I could log back into blogger and paste it, saving the blog contents.  I logged back in and blogger had a draft copy saved.  The draft didn't have everything on it that I had in my copied version, so I highlighted the text and hit paste. . . except that instead of hitting paste I hit copy again. . . and completely removed all ability to retrieve that copied information, since I essentially just copied over it with the draft.


I was too pissed off about that to fix it yesterday, and I'm still too irritated to go through the whole post and make it what it once was. . . but that's it in a nutshell.


That night our fancy pediatric autism specialist guy called me to discuss the results and said he thought the EEG result looked very good and that the data didn't show any signs of the movement that the neurologist had mentioned might be present in the results.  He also said that although the tests were normal, he felt the fainting spell Lily experienced were cause enough to continue investigating and hoped we'd go ahead with the video EEG.  I told he we were planning on it.


His staff is supposed to call me today to discuss setting up our next appointment.


I apologized to Leslie more adequately that night.  Her day had continued to spiral into the depths of hell. . . it just was sort of a sucky day all around, with lots of waiting in line, being late for stuff, having technical trouble, etc.  I offered her a martini, but she declined.  I took Emma to baton and let her share the rest of her evening with Lily.


The day ended better than it began.

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! 

Feeling Faint?

It's been a while since I last blogged.  I didn't really feel like writing anything.  That's not entirely true.  I felt like writing; I always like writing, but I just didn't have anything compelling about which I felt the need to write.  Nevertheless, as I sit here eating a sandwich made from two week-old roast beef cold cuts that smells vaguely of . . . something not roast beefy (because apparently my wife is trying to kill me) and has tiny blue-ish blooms of something sporelike growing on it like an angry bruise, too lazy to throw it out and buy something else from the cafeteria, staring obsessively (as usual) at the number of "views" and lamenting their precipitous decline (which stands to reason after some 'blog-silence'). . .two things occur to me:  1)  That was an extremely long and awkwardly written sentence, and 2)  I have something to share.


Lily appears to have suffered not one but two fainting spells at school.  Fainting, Jim?  Like losing consciousness fainting?  I don't think so, although the details are a skosh sketchy.  While an aide was putting Lily on the potty at school, her legs went limp, and she became very pale, and she fell forward.  The aide caught her.  They gave her some juice and tried her on the potty later and she did it again, this time falling sideways.  Later she was her normal bubbly little non-pale self (olive complected. . . like her mother *insert eye roll).  All of this occurred about an hour after she had eaten a snack, and various possible explanations for this were offered by the school nurse (blood sugar type stuff, etc) but one thing that Leslie (the woman trying to kill me with bad beef) and I wanted to investigate (or eliminate) was the possibility of seizure activity.


Apparently seizure activity is much more common in autistic kids than their typically developing peers.  I first became aware of this after reading a blog by Karen at Solodialogue about her child's recent EEG.  Read that post. . . >>Here<<  


Anyway, after following Karen's adventures we considered approaching our new fancy autism specialty doctor-type guy about having an EEG done.  But I forgot when we first visited him.  Then I forgot after he called us for a follow up.  But the school thingy prompted me to do so.  I emailed him, and he ordered an EEG and his nurse is, even as we speak. . . er, read. . . scheduling a consult with a pediatric neurologist to occur sometime after the results come back.  


I'm strangely unfazed by all of this.  I can't explain why, exactly.  It all reminds me of the process through which we uncovered her autism, and therefore received services.  Maybe she's having seizures. . . if so, at least now we'll know that, and be able to treat them.  I don't know.  Like I said, I can't explain my unfazedness.  


We have a history with medication.  Stimulants to help her focus better.  It was a debacle.  Four medications in, and about 8 of her 34 pound starting weight (I'll have to double check that) down, we stopped.  It changed her completely, and not for the better.  She was angry coming off meds, she wouldn't eat anything, she hated music, it was really really shitty.  I'll blog about that at some point just to get it "on the record" before I completely forget all the details of that particular suckfest.


I digress.  We have a history with medication, but apparently there are non-stimulant medications, used for treating EEG irregularities (seizures) that also help improve the symptoms of autism in some cases.  In a lot of cases, actually.  And while Lily may not have the right set of criteria to qualify as a "good" candidate for that  medicine, it occurs to me that even without that particular silver lining, I would rather know that she is having seizures and be able to get her appropriate treatment, than be blissfully ignorant of them and NOT get her treatment.

see how happy we are?  wtf is going on with my hair?

So for whatever reason, I'm in a decent place about it all.  And I think my wife is so stressed out about everything else (plus I just told her about the actual appointment time about two hours ago) that she hasn't had a chance to be fazed herself.  Monday we have an EEG scheduled.  Today and tomorrow will (to some extent) be spent preparing Lily for a trip to the doctor, and also preparing the doctor for a visit from Lily.  


I've already read through some of the information about the test.  Things like:

• During the test, your child should lie as still as possible.
• At times, your child may be asked to breathe fast, to look at flashing lights, to try to sleep.
• Your child will be asked to lie down on a bed.

And little tips to help out like:

• The best way to help your child stay calm is for you to stay calm.
• The most important role of a parent during the EEG is to help your child stay calm and relaxed.

And those sorts of things make me think things like:

• Are you fucking kidding me?
• Do you have ANY idea what you're saying?
• This may be somewhat "stressful" for all parties.

So I've called ahead because there is also a section on the information sheet that asks me to call ahead if I feel my child has any "special needs" etc. that I feel need to be shared.  And the message I left (because nobody was there to answer the phone) was essentially the following bullet points (I'm crazy for bullet-points in this blog post, apparently):

• Autistic child with ADHD
• Will not sit still for extended periods
• Will not remain calm
• Need to fill out all the paperwork in advance.  I don't want any stray questionnaires harshing my stress-buzz. 
• Call me and let's get this all figured out in advance.

We'll see what happens.  Nothing like that has happened prior, nor since (this was a day or two ago).

My stomach feels weird. . . nerves, or bad roast beef?

UPDATE:  My wife read the blog and claims she is NOT trying to kill me.  Just wanted to get ONE MORE sandwich out of that package of bruised, slimey and bluish roast beef.  


I said, "It's the ONE MORE" that kills you!" (not at all dramatically)


She rolled her eyes and said, "I'll throw it out."