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Thursday, December 15, 2011

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."



37 comments:

  1. Unfortunately kids can't be sedated for this type of test. My daughter had an MRI years ago, spine and brain, and they had to halt the test halfway through because she became agitated. Only afterward did they tell me she could have been sedated for the test, but they "thought" she would be fine during an hour-long prison sentence in a cylindrical coffin surrounded by drumrolls of sound. Yes, preparation is best.

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  2. That sounds so rough. Its good for you to get it sorted out but I'd be fucking nervous as hell. And I love how they expect your kid to be still. With a kid with autism and adhd...its not like you can explain that they HAVE to be still. At least that's how it would be with either of my kids.

    Keep us posted and good luck!!

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  3. I can understand your current non-fazedness. You're partially helped by the fact that you're doing something productive (I.E.: getting a test done) and, as you've noted, if you know what's going on, you can treat it.

    But I bet there's also a stress delay. I wouldn't be surprised if this hits you a bit later. Possibly even *after* the test. Stress is so weird, especially when our kids are involved. In the admittedly rare instances where something scary has happened with little G, it's been *after* all the sh$t has gone down that I start to freak out.

    In any case, if you do end up freaking out later, make sure to give yourself some room and slack to do so.

    If you don't? Great!

    Also, you won't ever lose me as a reader just because you haven't posted in a bit. :-) I just figure you have a life! Heh.

    Also, please don't die of food poisoning.

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  4. Oh crap! Hopefully you'll have answers soon which is better than endless speculation.

    As there is that connection between autism & seizure activity the doctor's office SHOULD have experience with autistic kids getting EEGs and have good strategies for that. But that said, some places are just infinitely better with this stuff than others. If they turn out to be awful, don't let them torture you or your kid & make you all feel bad, but rather let them know they are being neither appropriate nor adequate to the situation.

    Then hightail it out of there and finds a better place to get your scans where they are flexible, creative and experienced w/ autistic kids. Even if you have to travel a bit, it's worth it!

    Hope it all works out OK. And get some new luncheon meat, geez, I'm getting botulism just READING about your roast beef.

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  5. @Deb - She had an MRI early on. She was just a baby though, so it was sedation for sure. And even so, they STILL had to stop and start over because she started coming out of it.

    @Megan - my kid too. Okay, Lily, sit still now. . . riiiiiight.

    @Venus - I don't stress out about much, but maybe it will turn out that it actually manifests itself as sarcasm, and I'll find out later in life that I was the most stressed out person EVER.

    @Varda - I believe in communicating my needs in advance. I routinely walk out of doctor's offices when I feel like they have failed to uphold their end of the transaction. Whatever doctors may think, they are MY paid whore, and I will damn well get my money's worth (within the framework of their duty as physician yadda yadda yadda). Anyway, they'll behave. And I will do my best to communicate the difficulties in advance so they can't say they didn't have a chance to do it right.

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  6. Bless her little heart. I hope all goes well Monday. I'll be thinking about you.

    I love the way you convey all of your thoughts. Your a good writer.

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  7. I love your wife.

    Good luck with everything. I'm thinking about you. Poor Lily. That must've been scary for her.

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  8. It's a good approach - don't worry until there's a reason to worry, and even then, you're doing what you need to do.

    And I'm sorry your lunch tried to kill you. Between that and the orange earlier, it's been a rough food week for you.

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  9. Hey Jim, we've been down the EEG road. Suckfest? Hell to the Yeah. The best part was after 30 minutes of Ted kicking the shit out of me and me straining a muscle trying to hold him down and keep him from biting himself, Nurse Ratchet comes out and say, "Oh! You did such a good job, Ted - do you want a sucker?"

    I thought, Lady - he already had one. You.

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  10. Wow! I'm stuck on your "new fancy autism specialty doctor-type guy" having his nurse schedule the consult for you!! Anytime my son needs anything, our doc gives me a phone number and instructions to leave 5 or 6 voicemails in an increasingly angry voice then wait 3 months for an actual appointment.

    Karen's adventures in EEG-Land have made me wonder about some things, too.

    I hope it all goes well.

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  11. Blue roast beast, eh?

    I thought that they had special EEGs for kids that move around a lot, but that may just be around here.

    I hope that Lily does not have seizures, but I am glad that you are taking all this in stride, or at least trying to.

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  12. Good luck with the procedure. And its so hard to say calm when they start futzing around with your kid. And your kid sees you getting upset and completes the stress circle. That being said, take care of the little one and keep us posted.

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  13. I understand your desire to at least know what it is.. seizures may not be good but at least if that's it, then you know and it can be dealt with.

    just try to relax... I know everyone says that and it's really just empty advice.. it does help.

    btw.. that picture is SO effing adorable!

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  14. I feel I must use bullet points so my comment will fit in with the post.

    -I hope the test goes well and doesn't stress Lily or her parents out too much;

    -That's a really good picture of the two of you;

    -I'm glad your wife isn't trying to kill you. Life is always more stressful when loved ones want you dead.

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  15. @jen - THANK YOU! writing compliments are like comment porn to me.

    @Kyla - Me too!! And thanks. I think she just takes everything in stride, to be honest. But I'm not sure.

    @Carrie - it HAS been a bad food week. Eating out today. It's bound to be better.

    @Kelly - Yeah, Lily's a biter too. Oughta be a hoot!

    @Grace - I know, right? She called me to set up the EEG appointment. Then she called me to set up the ped Neurology appointment consult.

    @TMW - maybe they DO have a special EEG for movey kids. . . hopefully they'll answer THAT question when they return my call from yesterday.

    @Liz - I will be armed with books and iphones and an iPad. If we CAN keep her calm, we WILL keep her calm. But who knows what we can do.

    @Jaime - I'm pretty relaxed about this kind of stuff. We'll be okay. Thank you!

    @Jacqui - Thank you, thank you, and I agree. She seems to genuinely care about me not dying of food poisoning today. To that end, she has graciously offered for me to, "Buy your own goddamn lunch if you don't like what I packed you."

    Not really. I mean about the quote, not about the not wanting me dead thing.

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  16. Thanks, Christine! And welcome back. . .

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  17. Gah!! I really need to learn this RSS feed stuff!! First, olive skin is BEAUTIFUL - what is with the eye roll?!

    Now, what kind of EEG are you getting? You need the AMBULATORY EEG!! She gets it on and wears it for 24 hours - doing regular routine stuff! This is where (and it is ugly) - I wrote about it in late September - They put the electrodes on Lily with glue and send her home with her head wrapped and a backpack containing a recorder. She can move around all she wants after it is glued in place - that's the hard part. Our neurologist gave T a muscle relaxant before having it but he woke up when it began because the dose wasn't strong enough. You need a muscle relaxant for her!!! FOR SURE!! Don't get the EEG that is just an hour or so in the room. Unless she sleeps through that hour - you will not detect the seizure activity that happens in their sleep - she needs it overnight. Sorry - just want you to get the one that will make the difference.

    I am SO glad you are doing this but really and truly - it won't make a difference unless you have the right one! I don't want Lily to have anything done that will upset her without finding what you are really looking for and I've heard a lot of stories about EEGs that were not like the ones that T had.

    And Leslie is a good wife - you know how I know? You lived to tell the story after the roast beef was eaten. ;)

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  18. @Karen V. . . ugh! AMBULATORY??? I'll have to talk to the doc about that, but your son didn't experience anything that LOOKED like a seizure, like Lily did. . . right? Regardless, I'll call. This is for sure the hour long one.

    The eye roll is related to how my wife tells me about her olive complexion and she's pale and pasty as me. . . though in her defense, i think I was olive complected as a child too. The years have been cruel.

    You don't know I lived. I might be dead RIGHT NOW!!!

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  19. It's not a bad thing to be unfazed. I think you just do what you have to do for your kids and get through it. Sometimes you save your freak out for after the fact. (Or maybe that's just me)

    Throw away the roast beef. Yesterday.

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  20. I hate wasting food. Kudos to your wife. She figured YOU were gonna eat it first.

    Hope all goes well at the doc.

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  21. Hey! I tried leaving a comment yesterday but blogger kept bumping me out.

    Anyway - as a wife, who often packs lunch for her husband I will tell you this. She wasn't trying to kill you. She just didn't want to see food go to waste but didn't really want to eat it herself. It's that whole "Give it to Mikey, he'll eat anything..." kind of thing.

    As for Lily - I can't even imagine how you are feeling. I hope the hospital gives you as much support as needed to make this procedure as easy as possible - for ALL of you. Try to get some rest - sounds like Monday will be a long day. My thoughts are with you and your family!

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  22. @Robot - bah! and thank you!

    @AW - you're all in cahoots!!! all the women tryin' to kill the menfolk!!!

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  23. I'm sorry to hear that she's been having some issues, but I'm glad things are moving quickly and that you'll hopefully know what's going on soon.

    I had a big seizure when I was 21 and it was totally news to me. I woke up with my head in someone's lap, staring up at two faces. I wish it had happened after I ate the awesome salad I was going to eat, but instead said salad ended up all over the floor, along with plenty of other things. Fun times.

    But back to you guys...I really hope everything goes well at the appointment, and that you get some answers.

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  24. This is completely unrelated, but I just checked your history page and saw that you're in Pennsylvania. I'm in Philadelphia :)

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  25. Oh, jeez. Good luck, friend. You guys will get through it, although it does not sound awesome. I'm glad you're currently unfazed, because what would...fazing? do for you other than making you stressed about something you can't control?

    Good luck. I hope you get some answers and I hope they're happy answers. :)

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  26. Thanks! Welcome back from the magical kingdom.

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  27. That just sucks, Jim. I'm so sorry that you have to go through the EEG, but agree with many folks who said you're doing the right thing. May the force be with you on the big day!

    On a side note, after having odd fainting spells all my life and plenty of EEGs (including one where I was admitted to the hospital for 5 days!), we discovered that I have issues with low blood pressure. If the Lily's EEG comes back inconclusive and you want to talk, please feel free to contact me!

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  28. I hope the test is the least stressful it can be for all of you. Knowledge is power, right? I've worked with many, many kids with seizure disorders and there are excellent medications to treat this condition. Whatever is going on, I'm keeping my fingers crossed you find out soon and all goes well for your darling Lily.

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  29. I came here to tell you that I am watching GRIMM but when I started to read your post I was really worried and didn't want to comment about something so frivolous. I hope it's just blood sugar stuff. But poor Lily having to deal with something like an EEG.

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  30. There is something comforting finally knowing what's wrong. The not-knowing can be so much worse. I agree with your wife, "One more sandwich!"

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  31. mmmmmm 2 week old roast beef!!

    It's unbelievable how we become used to some of the fucked up shit that's "co-morbid". How they expect our kids to sit still is beyond me. Sleep studies? MRI? yeah right!! UGH.

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  32. *Thanks for the update, Good to know it hasn't killed you, yet at least.
    A side note.. make your own sandwich? ;)

    I just recently started reading (your blog) and was hoping the silence wasn't a regular thing.

    While reading the first bit I immediately thought seizures.. though I hope that isn't the case for you.. But you should know that all I have to back that up is TV medical dramas.. so good to know you have a specialist.

    In all seriousness though I do hope you get to the bottom of it, the worst part is not knowing - it's easier, or at least less stressful, when you have somewhere to start.

    And of course.. Happy Holidays!

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  33. @M2LM - We'll know more in a week. Thanks.
    @Handflapper - Thanks.
    @AFV - Grimm lost me after one episode. I meant to follow up on it "On Demand" the other day, but got side tracked? Does it get better? She seems okay with it. I'll blog the process itself. i wasn't super happy about it, but not nearly as upset about it as she was. Very sucky procedure.

    @SG - You're in cahoots with her.

    @Dani - No stone left unturned or something along those lines.

    @Brittany - Thanks for sticking with me through the silence. It's hard to keep me stifled TOO long though. And I do pack my own sandwiches. But it was her turn because I was putting the oldest to bed, which is last. . . it's a whole long ritual thing to explain. Honestly if it would have been my turn. . . I'd have packed the two week old beef too.

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