Thursday, January 5, 2012

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.


  1. Now's probably not the time to tell you I worked in Hospital Admin. for the better part of my career before I stayed home, is it??? And hubs works in a hospital...send me a private e-mail if you want some help navigating this. The bottom line, healthcare is a lot like an IEP--except worse. Add insurance and a bunch of MD's and you're in Dante's inner circle of hell. With your family.

    Thing is, you're doing it all right. Plug away, ask questions, go to the right docs and if you're not happy---find a new one. Find one that will LISTEN to you and do what you want. Wether they believe it or not, YOU are the expert on your kid. If you are not happy, let them know and move on.

    I'm glad your day started better than it began. There is nothing worse than that helpless feeling when it comes to your kids. Nothing.

  2. I hate to be the one to tell you that the cardiology appointment will be just as much fun. There are portions where they have to stay still HAHAHAHAHAHAHAHA. Klaw bested three nurses during that portion.

    Are these pediatric specialists you were sent to because they are acting clueless about special needs kids. I'm so sorry y'all are going through this & no closer to answers yet.

  3. Can I just say that I think you hit the nail on the head with Reason for the Fight #3 - "having to take Lily in to the appt in the first place" You know they're just going to end up giving test results which will be all talking and Lily doesn't really need to be there for that.

    BUT I think the source of frustration is that we have to fool with all this stuff AT ALL. It's just exhausting and stressful and puts a strain on the whole family.

    It's frustrating living the "no stone unturned" lifestyle. Most of the time you don't find out anything earth-shattering, but if you don't investigate everything, you are certain that will be the ONE THING ten years from now they say could've "cured" our kids.

    And really - when you go to the cardiologist (or whatever other specialist is the flavor of the day), you don't really want to find out anything earth-shattering BUT sometimes you have to remind yourself of that because some information seems to justify all the time and trouble and effort put forth.

    It's just a vicious cycle....

  4. Lizbeth up at the top here left you a great comment, especially about knowing your kid best and that you're doing it right. It's something that's always so frustrating to me in regards to my husband's health care...that the medical professionals give me very little credit for knowing my husband. Heck, they often don't give him much credit for knowing HIMSELF!

    It takes a lot of patience. And I'm sure when it's your takes even more.

  5. A friend of mine's son just had to have an inpatient more extensive and prolonged eeg done...they aren't going to tell you that AFTER you do this next one, right? I hope you find some wonderful soul at the cardiologist's office who can attest to the wrongs of the system and help to make it easier to navigate for you and Lily, and Leslie.

  6. I commend you on keeping your composure. Both of you. I can't tell you how many time's i've lost my shit at doctors appointments. Not dropping F'bombs and such (im much more tactful) but.. yeah, we've had some appointments like that. We keep rescheduling our neuro appointment because I'm not at a point where I will be able to NOT lose my shit with him.. IN the f-bomb kind of way. Composure. Always keep your composure.

    That was quite the crappy day. Very happy to hear it ended as well as it did. Those spiraling days are just the worse. Congrats on the normal eeg. Hoping the cardiologist is less adventurous :)

  7. @Lizbeth - this was a specialist consult. We won't be having an ongoing relationship with him, and honestly, he was fine. . . just blithely unaware that his staff can't do EVERYTHING he thinks they can do.

    @Dana - you're not telling me anything I don't already know. Good times!

    @ACTB - yeah, i tried to get out of bringing Lily to the appointment but they said no go.

    @JJ - this all has been a patience building experience. I didn't start out with much, and maybe I still don't have tons. . . but i have WAY more than I started with.

    @Andrea - I did ask. . . what's after THIS eeg? And we talked about "if we see something" and "if we see nothing" scenarios.

    @Rhonda - thanks. We're usually in the right mindset when we go to these things, but the pissing contest pre-appointment probably did us in.

  8. I'm gonna vomment all over this. Because I love the smell of suppressed rage. So glad that Lily showed that EEG how it's done.
    My son had a sleep study done once with 20 leads glued to him and a camera in the corner of the room. I was allowed to "sleep" beside him. Every time one of us would move- a voice would say "please remain still"- guess what? The apnea results were inconclusive. Ya think?
    You and your wife are fierce fighters- both figuratively and literally. ;) Thanks for sharing.
    Kris :) (Letmepeeinpeace)

  9. suppressed rage and napalm. . .

    hopefully this video EEG will allow Lily to roam all she needs to so they get some 'good' data.

  10. One thing to look into with the cardio is to see if Lily can wear a Halter (sp?) monitor *while* she does the EEG... It will make one less test you have to schedule and compared to the EEG leads, the Halter leads are nothing.

    The offer is still there to to chat if you want. I did the whole gamut of testing for "unknown fainting" -- but it was abot 15 years ago... Hopefully, there are better methods now :-)

    Good luck, and remember... It's a lot easier to keep your sh*t with a stupid doctor when you have a 15-page powerpoint prepared ;-)

  11. Jim, Holy shit, what a day! Having been through a lot of medical hooplah in my life I just want to say that these situations suck and are stressful and we all flip out on our loved ones from time to time. F-bombs happen. You are excellent parents and doing so much for your Lily. I hope you continue to get normal results but also some answers.

  12. Ahhhh... Doctor appointment frustration. I guess it applies to all types of dealings. Yours was completely understandable and so very familiar. Me and the hubs have paralleled your story minus the kids. Lots of eff bombs. I fear to say I'm not a lady at times.
    As for sweet Lily, you fight your fight! Knowing what she can do and not do is your understanding, not the docs and of course you'd want it to be the most comfortable for her while getting the best results. Hope this is followed by some good news and a better test.

  13. Doctors can be such frustrating, clueless jerks sometimes. The guy could have at least shown a bit of compassion instead of having a pissing contest in absentia with the EEG guy. I am sorry that you are having to go through all of this.

    The driving part of the story was actually very familiar, almost as if I've experienced the exact same thing...

  14. I'm probably going to vomit all over your comments. As frustrating as it is, keep plugging along. Trust your gut. You know your child best. I just got to tell our allergist "I told you so" - twice. Not that I wanted my kid to have food allergies, but it was really awesome to be right. Like Lizbeth said, navigating health care is like Dante's inner circle of hell. You just have to keep fishing until you find those few people who really take care of you and your family.

  15. Yes, the medical system can be very frustrating. What you need to find is one extraordinary nurse, therapist, doctor and it will give you more hope. The medical community is often frazzled and overworked and sometimes forget what it's like to be on the other side of the desk. I can sympathize with both sides, because I've been on both. The good news is, they didn't find anything worse than what you're dealing with. The bad news, they might have missed something, so they need to repeat or do more tests. Yes, some doctors have no idea what nurses can and can't do. Others, well, there are the odd extraordinary ones. Unfortunately, most are rather dismally human.

  16. Nothing to add except that you have my sympathy. I managed to avoid going to a doctor or hospital for many, many years before having children. Now I practically live in doctors' offices.

    Good luck!

  17. @MTLM - the way it was explained to me, once this video EEG is done, if there are no abnormal results the whole process will be done and we'll just 'observe her'. So this will be the last step. . . I think.

    @Kvetch - Thanks! Yeah, even WE lose our patience from time to time.

    @TRM - Which reminds me, you said you were blogging the findings, but I never saw a blog post.

    @TMW - Yeah. . . jerks!

    @Amanda - Plus after christmas, the amount of trust I can fit in my gut doubled.

    @Deb - I agree to an extent. With kids like Lily, you end up getting referred to specialists a lot, and about all you can do is rely on your doctor to make a good recommendation. . . often the first visit is the last, so it's not even like we look for a new, better guy.

    @Christy - No kidding. us too.

  18. Gah!! I'm glad you got that off your chest. What a bad day. I still don't trust this "video EEG" crap they are telling you to do. WHY oh WHY will they not do the standard ambulatory 500 lead go home overnight and sleep in it EEG? She needs to sleep overnight in her own home in it to have good results!

    I hope you downed the martini Leslie refused. I will be emailing you some info tomorrow morning (remember - I'm PST so don't look early!)

  19. I could feel how stressful it was just reading this. I hope the next appointment isn't as bad. At least Lily got McDonald's and you got vampire protection...that's something.

  20. Whoa sounds like the rough start of a day. Doctors appointments always stress me out too and it sounds like you're all just going in circles, which I can imagine must be frustrating. I hope your next appointment goes better.

    ~ Lisa

  21. It's like cruel and unusual punishment to make an Autistic, ADHD child do these EEGs. My son did the ambulatory one. That showed nothing. We had the "pleasure" of doing the 48 hour at home one...Not sure about Lily, but my son has SPD-and sleep issues. He didn't sleep much at home during those 48 hours. There was no abnormal brain activity. No seizures. It was a huge pain in the rear. Good luck with the cardiologist. I hope it goes ok...

  22. Oh boy... Well, at least the day ended better than it began. M and I have these kinds of days as well (tho generally for other reasons) and end up apologizing at the end of the day. The silver lining? Your girls see adults who have (very normal and understandable) stress and conflict then work through it. I think that's actually pretty important. Having said that, I won't wish you repeated episodes like this just so they get more examples. ;-)

  23. I'm new here- found you through Lana and Karen. I'll have you know I am officially FREAKED OUT because my son is scheduled for an EEG on the 13th of February. Before I read all of your EEG posts I was not worried at all- the neurologist's office made it sound like a big piece of chocolate cake. I am, however, very grateful that I read your posts because now I at least have some idea of what we're up against, and hopefully I'll be able to prepare my boy a little better now. :) Still totally freaked out though...

  24. @Karen - oun't know. . . i'll read your email.
    @jacqui - Lily loves McD's :)
    @AW - It will. We usually don't fight.
    @Lisa - I don't know what to expect. I guess they'll find something or they won't. I'm pretty okay with either.
    @Venus - Thank you for the "not wishes" ;)
    @Peace - That was not my goal. The EEG wasn't a nightmare or anything, but she did NOT like it. They DO make it sound simple. . . I guess it really depends on your son, and how he tolerates that kind of stuff. If you're doing the standard one, it's only an hour of shit before you can make nice and snuggle and move on with your lives. . .

  25. Either way, I'm GLAD I read all you had to say so I can better prepare my son and I for the experience. His biggest struggle will be fear. He's terrified of a regular doctor's check-up. Having things stuck to his head is going to have him majorly distraught. OR maybe not. Who knows. Can't predict anything till it happens, right? :)

  26. Well, on the plus side, he can watch DVD's or play nintendo DS or iTouch or whatever, if he likes that sort of thing, or it calms him.

  27. Gah. I'm keeping my fingers crossed that everything else goes more smoothly and you get some answers, finally. That's so frustrating.

  28. Praying that everything is A-ok with Lily. The cardiologist will probably want to do an echocardiogram and then possibly a cardiac cath depending on the findings of the echo. That's what happened with Andrew. Either way, the whole experience of dealing with specialists, their staff, and all the tests involved can be very draining for everyone involved (physically and emotionally). Hang in there!

    1. We had something "hearty" done with her before they prescribed meds for her. I don't know if that will be enough or not. Don't know if it was an EKG or not.