Wednesday, July 17, 2013

Epic EEG Fail

I almost had myself convinced that this would work.  The boy was in a good mood.  As an ID aficionado, he was thrilled to be in a hospital where everyone wears identification, and he did indeed check everyone's.  The night before, I showed him pictures from a couple of very helpful blogs so he would have an idea of what was going to happen.  I had promised him that he could watch any movie he wanted during the test.

Erin, the child life specialist at the hospital, demonstrated how to attach electrodes on a doll, and the boy helped.  When he asked for a movie, I told him he needed to wait until he got his "stickers."  He took the electrodes off the doll and attached them to his own forehead.  I took this as a good sign.

"Movie, please."

The boy was scheduled for an EEG because of all the sleep problems.  His doctor is concerned that he might be having little seizures that are waking him at night.  He also had what may have been a brief absence seizure at aftercare one day.  I had heard a report on NPR about how doctors are being more aggressive with seizures in order to minimize the risk of brain damage.  If my boy was having seizures, we needed to know.  So yeah, I was taking this seriously. 

So he hopped up on the bed, all smiles, and asked for a movie on the iPad.  Granted.  Then the technician began parting his hair and applying some sticky goo to his scalp.  The boy freaked.

"Nooo!" he wailed, and wriggled down the bed.  I held his hand and made soothing noises.

"Hold still, buddy.  It won't take long.  Just watch the movie..."

Uh, yeah.  No effin' way.

After he hit and kicked us a while, we decided to swaddle him.  I was told that many children on the spectrum feel more secure that way, and it's less forceful than holding him down.  Another nurse--a tall, strong man with kind eyes--was brought in to help.  The sheet almost kept his arms still, but it wasn't tight enough, and he was wiggling free.  He was also screaming and sobbing and breaking my heart.  He tossed his head around so the tech couldn't even part his hair.  If we could just keep him still until the electrodes were on, he would calm down...maybe.

There was no keeping him still.  This struggle went on and on.  I gave him kisses.  I sang him songs.  I tried to distract him with promises of ice pops, but to no avail.  My baby was a hysterical wreck, and I was not far behind.  What do I do?  Is this the right decision to hold him here?  He's so unhappy.   But what if he's having seizures and we don't know it?  What if we give up and there's something wrong?  Could I live with that?  Can I live with this--this panicked little boy, crying and thrashing like I've never seen?

I felt paralyzed.  We needed answers, but at what expense?  Wasn't this experience almost as bad as a seizure?  I looked at the nurse and released my grip.  He nodded.

"We're done here," he said.  "This is too stressful for the patient."  I let out a long breath.  .

"Off!  Off!  Off!" the boy yelled.  He leapt from the bed and immediately began pulling whatever wires had been attached from his head.  I cuddled him close and kissed his forehead.  He was sweaty and teary, but he was starting to calm down.  I, however, was not doing so well.  I felt sick and guilty, like I had betrayed my child by putting him through this.  (And also like I had failed him by not actually going through with it.)  I took another deep breath and willed myself to keep it together.  Don't.  Cry.  Here.

Not now. 

 "Are you O.K., Mom?" asked Erin.  And that's all it took.  A simple show of concern for my welfare, and I totally lost it and began crying.  I buried my face in my hands so my son wouldn't see me cry.  I didn't want to upset him even more.

"That...just...really...sucked," I managed to get out between sobs.

"You did a great job, Mom," the nurse said.  "I've been doing this for 30 years, and he's only the second patient who's forced me to quit.  He's strong.  That's good."

I looked at the clock.  The struggle that seemed to have gone on for hours had lasted only about 15 minutes.  I was drained.  It was time to go home.

And that's that, I guess.  We're going to follow up with his neurologist, but we're not trying this again unless he's totally willing.  I was worried that he'd be upset or scarred for life, but he was himself as soon as it was over.

He's even looking forward to seeing the dentist.  But let me tell you something--if we get to the dentist, and he doesn't feel like opening his mouth, he doesn't have to.  I don't effin' care.



  1. I'm so sorry it didn't go well. I know how heartbreaking it is to see your kids upset. I'm glad he didn't have to go through any more and they just let you go when they saw how hard it was on him. But I know it's hard to not know. We have 3 of these scheduled for the next month w my kids and I expect it will go like this. With Aaron, we have been forced to push through on a lot of these medical things. Honestly, this makes me feel awful b/c if you feel awful about this, I am the worst mom ever... We had to hold Aaron down so many times for blood tests and sedation for MRI's and when he has his feeding tube and for surgery IV's. Its so awful but we had to. hugs to you---

  2. Thank you. Really. I hope things go better for you. The links on the post are really helpful. I knew what to expect, but it's hard to explain to little ones... Good luck!

  3. I totally feel your pain. Your experience was pretty much the same as mine. Had to papoose him to keep him from pulling off the electrodes. He was sweating and struggling so much that the electrodes would keep falling off.

  4. I'm so sad reading this, just imagining...I can't. We love you guys....