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…
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.
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.
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 –
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.