Spacing Out vs. Seizures.

At some point, we all “space out.”  Whether it’s lack of sleep, boredom or an intentional way of avoiding a droning spouse or friend, or if it’s the 115th time in the last hour that we’ve heard Dora ask the Map for directions when she does not know which way to go.

That’s probably why I never thought twice about my son doing the same thing…

Took me a bit to find this spacy photo...

Often, getting the attention of my son is a daunting task.  I can say his name.  It’s as if he does not hear me at all.  I can say it again.  And again.  And again.  Still no response.    He will not look at me.  He does not flinch.  It’s as though he is completely absorbed in something or completely “spaced out.”  I have always attributed this lack of response to focus elsewhere.  Interest that has amplified to obsession on a particular subject or object.

I never thought before Tuesday of this week that it could be a seizure.

Marcie Hall, a child psychiatrist at University Hospital’s Case Medical Center has posted the following question and answer at an ABC News website:

“Question: How do you tell the difference between [an autistic child] staring into space “as if in his/her own world” and an absence seizure?

Answer: Children with autism are often described as being in their own world, or staring off into space. And it’s important to distinguish that from an absence seizure. And absence seizure is a brief interruption [of] consciousness lasting approximately two to 10 seconds in which interaction with other people is just not possible. The child may blink, they may make chewing noises, they may have small twitches in one or more limbs during this brief period, and they do not lose bowel or bladder control and they do not lose muscle tone. And oftentimes children will resume the activity that they were doing as if nothing had happened.”

I never thought of the possibility that my son may have some of this “absence” or “petit mal” type seizure activity going on.  And that possibility is scary.  Mostly, because I don’t understand it.  The same way I did not understand autism when I first heard of it.

The realization that this might actually be a condition in my son came with our neurology appointment on Tuesday when Dr. Chez, the director of the pediatric neurology department and the head of the Autism Medical Treatment Center for Sutter Health said it in such a very plain matter-of-fact manner.

He made sense.  It should be ruled out – or in as the case may be.  I cannot dig my head in the sand and attribute his behavior to “just cuz”.  And, of course, in ruling out the possibility of this type of seizure activity, diagnostically, my son must have an EEG.

This is an example. I don't know how they will do the electrodes for my little guy.

An EEG means electroencephalograph.  Web MD describes it like this:

“An electroencephalogram (EEG) is a test that measures and records the electrical activity of your brain. Special sensors electrodes) are attached to your head and hooked by wires to a computer. The computer records your brain’s electrical activity on the screen or on paper as wavy lines. Certain conditions, such as seizures, can be seen by the changes in the normal pattern of the brain’s electrical activity.”

I have to face the fact that this EEG thing will not be easy.  I have to take my son to the local hospital (the same hospital his grandma was at where he visited her in March) and they will take us in a room right near the lobby.  This is where the electrodes will be placed on his head.

According to the instructions we’ve received, I have to shampoo him the night before we go in.  Then, they measure his head and mark the areas with a marker at which they plan to attach the electrodes.  Next, they rub a gritty solution on the appointed spot, add a cold and smelly glue and attach the electrodes.  Once the electrodes are attached, his head is wrapped with gauze.  The whole procedure supposedly takes around 30-60 minutes.

This hat lasted about 15 seconds.

I can bring his iPad and his Nintendo DS to keep him occupied while they attach these electrodes but I’m pretty sure there will be problems.  First, he does not like any object on his head whether it is sunglasses (last about 10-30 seconds per wear), hats (only 15-20 seconds at most) or earphones (immediately removed).

These electrodes have to stay on for 24 hours! He has to sleep in them.  I have to have him wear shirts with buttons.  We have one shirt with buttons – and truthfully?  I don’t know where it is.  I guess we’ll be getting a couple of them now.

I’m getting a social story ready as well as pictures so he can be somewhat familiar with what will happen.  I’ve already told him about the electrodes.  He cried.  I felt like dog poop.

We’ll make it through this.  It’s important.  As I Googled to explain this concept to you, I came across this article from our very own neurologist –

“Abstract

Autism spectrum disorders (ASDs) affect 1 in 166 births. Although electroencephalogram (EEG) abnormalities and clinical seizures may play a role in ASDs, the exact frequency of EEG abnormalities in an ASD population that has not had clinical seizures or prior abnormal EEGs is unknown. There is no current consensus on whether treatment of EEG abnormalities may influence development. This retrospective review of 24-hour ambulatory digital EEG data collected from 889 ASD patients presenting between 1996 and 2005 (with no known genetic conditions, brain malformations, prior medications, or clinical seizures) shows that 540 of 889 (60.7%) subjects had abnormal EEG epileptiform activity in sleep with no difference based on clinical regression. The most frequent sites of epileptiform abnormalities were localized over the right temporal region. Of 176 patients treated with valproic acid, 80 normalized on EEG and 30 more showed EEG improvement compared with the first EEG (average of 10.1 months to repeat EEG).”

Looks like our doc knows what he’s doing.  If my little one has an abnormality (and from the looks of this study nearly 61 percent of the ASD kids do) treatment with valproic acid may help him – at least that’s what my layman’s sense is telling me this says – it “normalized” the EEG in almost half of those treated with it.

I will share our experiences with you as they happen so you can have an idea of how it goes.

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About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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18 Responses to Spacing Out vs. Seizures.

  1. jessicaesquire says:

    We just went through this. We had lots of space-outs and the neurologist, who works with ASD kids, recommended an ambulatory EEG. Feel free to email me if you have questions. For now I’ll just leave you the link to my post on it. It won’t be as bad as you think.
    http://theseversons.net/2011/08/dos-donts-surviving-childs-ambulatory-eeg/

    Good luck!

    • solodialogue says:

      Thanks for the link, Jessica! Your post was very helpful for showing how the EEG looked on your son! I cannot imagine a 3 day adventure of this! Just the 24 hours will be challenging at T’s age. 🙂

  2. Julie says:

    My husband as a young man would “space out”. He wondered to himself on several occassions if he had epilepcy. Flash forward 35 or so years and he started taking Wellbutrin (notorious for lowering seizure threshold). He started smelling cigarette smoke in places where there should be done. His doc told him it was a side effect of the Wellbutrin. Flash forward again about a year and a half, two years. We were leaving day care and my husband collasped in a grand mal seizure.

    He has had a seizure disorder his entire life – the Wellbutrin brought it out to the forefront. Thankfully he wasn’t driving or alone with our son.

    I’m glad you are taking care of this now. You are an amazing, diligent Mom! I hope it goes well.

    Julie

    P.S. Did you see the new theory on children with autism and emotions? Awesome stuff – let me know if you want the link.

    • solodialogue says:

      Julie! I’ve missed you and must catch up. That is a very scary story about your husband. I’m so glad for all three of you that it was found without something worse happening. I guess it makes sense that medication could bring a seizure to the forefront but I had never thought of that before. Every bit of information helps. Thanks for sharing!

  3. J.T. says:

    Have you ever tried to move your hand in front of his eyes when he has these episodes of “absence”? My son had them at one time (now much less), and some therapists told me that with the “true” epilepsy you cannot blink if someone moves a hand in front of your eyes.
    In most cases, I think the “spacing out” is an attempt of the brain to return to a kind of baseline when it has to process too many stimuli at once, dramatically reshaping the focus when a stimulus is more salient.
    In any case it is better to consider these aspects with an EEG and not merely with empirical evidence … My son did an “EEG sleep deprived” and lasted only an hour and a half … Nothing particularly invasive, and the child psychiatrist assured us that it was sufficient to detect any abnormalities …
    Good luck and stay positive!

    • solodialogue says:

      Thanks, J.T.! I have not tried that. I will check it out next time. You make a very interesting point about the re-set on the brain when too many stimuli are involved. I’m so new to the EEG thing – I don’t really understand the sleep-deprived EEG – I’m assuming they think the seizure activity will manifest itself more readily in such a state. I wish it was only 1.5 hours!! We’ve implemented a social story with a reward at the end… He gets there is a reward if he makes it through the whole 24 hours with his stickers (electrodes) still intact… We shall se how it goes!

  4. OMG so scary for you guys 😦

  5. ElizOF says:

    Fascinating Karen… I look forward to hearing more about how it went and the outcome. Sending virtual hugs and prayers… 🙂

  6. Hey there — believe it or not, this same thing was actually a concern for me as a teen. I have had problems all my life with fainting spells (it was later found out to be a condition involving blood pressure). So, at 15, my parents had me admitted to the hospital for a WEEK-LONG ambulatory EEG.

    I know it’s going to be a lot more difficult with a kindergartener on the spectrum, but I wanted to let you know that it wasn’t that bad. The electrodes weren’t the most comfortable thing in the world, but they did not hurt — it was more like having a big tangle of greasy dread-locks. And at least you can do the EEG at home — that should be worth some bonus points as far as the comfort scenario goes.

    I’ll be thinking about you and T, but I know you can do this. And you know where to find me if you need to vent!

  7. jnette says:

    Interesting! I can totally relate, as I myself have been known to do exactly this as you describe it here…. for as long as I can remember, and still do. I still hear everything around me, hear others attempting to “snap me out of it”.

    I never felt it was anything but an attempt of my brain/mind to regroup.. catch a quick “power nap”, if you will. Or the re-oxygenation of the brain we receive when we yawn.

    Looking forward to reading how it goes and what the results are. I’m sure it’s a bit frightening for the little guy,

    xoxo
    Jnette

  8. Ann B. says:

    Hello! I am considering the same thing with my five year old son. He is on the autism spectrum and spaces out everyday. We are scheduled for an appointment at a children’s medical center. I am insisting they consider an EEG and not just merely his behavior alone. He receives speech and occupational therapy 2 to 3 times each week. I am really interested to find out what the outcome of your son’s test. Thanks for posting your story. God bless you and your family!

    • solodialogue says:

      Thank you Ann! You are always welcome here. It sounds like we have similar issues. My son also receives speech and OT 2x per week and a social skills class. I will keep you posted – plan to post about the EEG on Thursday or Friday and the outcome when I hear. Hope to hear back from you about how your son does as well. It’s wonderful to meet people who can share experiences here. 🙂

  9. lu says:

    if you ever get this plz help me. my son spaces out and I need help

    • solodialogue says:

      You have not given me any information to try to help you. I am not a doctor, just a mom writing about my experiences. If you feel your child’s spacing out could be seizures, I urge you to contact a physician who can get your child checked with testing.

      If you have a specific question, please feel free to ask. I hope you find the help you are looking for.

  10. Alexis says:

    Hi I just found this article when searching for similar symptoms of my niece. I was just wondering if your son had complained of headaches prior to you diagnosing the condition. Thank you so much for all the information

    ~Alexis

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