Wednesday, March 21, 2012

Ugh EEG!

I got a call recently from my Grandma who lives in Liberty, Mo., which is a suburb of Kansas City. She told me that my cousin’s daughter, who has been living with them, was just diagnosed with Pervasive Development Disorder – Not Otherwise Specified (PDD-NOS). She is now working through the system to get the help needed to advocate. She told me that one professional had recommended having an Electroencephalography (EEG). This is where doctors record the electrical activity along the scalp. This brought up memories of one of the most traumatic episodes we’ve had with Konner ever.

When we first had Konner diagnosed the psychiatrist said that she was a little concerned with some of the activity she noticed in the testing. She said that Konner seemed to “zone out” some while she was asking him questions and it took some time to get him back to answering questions.

We all seem to “space out” at times. When we’re in deep thought we gaze into la la land waiting for the answer to magically appear. However, with Konner it seemed to happen more often than normal, and it was more prolonged than your average brainstorm.

She seemed to think that he was having what is known as silent seizures. So what are silent seizures? Well, according to Seizures occur when electrical signals within the brain malfunction momentarily. One type of seizure is known as a petit mal seizure. Petit mal seizures are sometimes referred to as silent seizures or absence seizures because they are often hard to detect due to their subtle symptoms. Grand mal seizures are characterized by violent convulsions that are quite noticeable.

The doctor set us up with Dr. George Miller, a neurologist in Tulsa, and we made an appointment. He was very knowledgeable about the problems involved with Autism.

We were told that Konner would have to be in to the office early in the morning, could not go to sleep until midnight the night before, and had to be awake again at 6 a.m. This is done because the sleep deprivation seems to help spur the brain activity that causes the patients to have the seizures.

For anyone who has an autistic child you know that they run on schedules. Doing something like keeping them awake past their normal bedtime and waking them up at a different time is traumatic enough. However, to add to this, my wife and I decided that, since we had to be up and at the office so early, we needed to stay in Tulsa. So, we drove there the night before, rented a hotel room, and proceeded to keep Konner up late. There was no major trouble with this. No meltdowns that night. Just the constant shaking and dancing around the room to keep him awake from about 10 p.m. until 11:45 p.m. when we finally decided it was close enough.

The real trouble came in the morning when we had to wake him up. As you can imagine the child was exhausted, and pushed to his limits. This would be hard on a “neurotypical child” let alone an autistic kid. We began shaking him to get him awake. Tossed him around a little, put him on his feet to make him stand, but he just kept going limp. After a few minutes the meltdown began. This child screamed, kicked and tossed for what seemed like an hour, although I think it was more like 20 minutes. On top of all of this we couldn’t have breakfast either. As he got louder there came banging on the wall from the poor guy in the next room who was trying to enjoy his lumpy hotel-room bed the best he could. Not sure who the guy was, I do apologize to him.

We finally got him calmed down and off to the doctor’s office we went. Konner found a large fish tank in the waiting room, which kept him quiet and calm for a while. I was walking on eggshells the whole time waiting for the next meltdown.

We finally went back to the little room that seemed to be pretty small. It had a bed, one chair, and lots of wires and gadgets. We waited there for a while longer, the whole time Konner was acting pretty tired. As the assistant came in to hook him up I realized we were in for a fight. Konner did not want any part in this test. He started crying immediately. Between me and the assistant, who was about my size, we held Konner down on a bed and the man began wrapping him into a sheet like a mummy. The whole time Konner was fighting us as much possible (who can blame him though). Jen was trying to console him, but to no avail. He was crying, kicking, and screaming as the man started putting Vaseline covered sensors all over his head.

There is nothing more distressing than knowing that your child is in agony, and you are taking part in it, but there is nothing you can do. I just kept telling myself, “We’re trying to help him.”

After all the wires were attached they took a strobe light and began flashing it in his face at different speeds. This is done to help provoke the seizures.

The good news is that after a few minutes he crashed out and went back to sleep. However, the entire time they were doing the test he was sniffling. About every minute and a half I could hear him gulping for air.

The testing took about 10-15 minutes and then we waited. When we finally got to talk to the neurologist we were relieved to find out that Konner was not having silent seizures. He’s just a really thoughtful child.

Some might be thinking, “Man you went through all of that for nothing.” I look at it like this; we had to go through that to find out what was best for Konner. If he was having the seizures we would need to find a way to help him with it. If we didn’t have him tested it could have turned into a larger problem, as anyone who has read any of Jenny McCarthy’s books know from her child’s experience.

Either way, traumatic or not, I thought I would share this for anyone who may have to go through the experience yourself. This is a heads-up of what you might expect. I hope that your encounter is different.

Disclaimer: I am in no way claiming to be an expert. I’m just a father who is trying to learn as much about Autism as I can to help my child. I hope that you all can learn from me, and I from you. I ask anyone who has questions or comments about something I have written, or autism, please contact me at I will try to answer questions as I have time, and if I find it interesting enough I may touch on it in my column.

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