Sunday, June 24, 2012

The EEG Test Stress.. 10 Ways to Ease It

(Trey is 2 years and 9 months old)

At some point during either the diagnosis process of Autism, or at some point in your Autistic child's life.. your neurologist will most likely want an EEG done. An electroencephalogram is a record of the tiny electrical impulses produced by the brain's activity. By measuring characteristic wave patterns, the EEG can help diagnose certain conditions of the brain such as seizures.

Trey had an EEG test at the hospital last Thursday.  Prior to his appointment, I tried to read as much as I could about it in order to prepare us for what I knew would be a stressful experience. There are different types of this test the neurologist may want done..a short 1-2 hour or a full 24 hour test.  Trey had the short test.. but with either one, the big chunk of stress happens when the electrodes are put on.  No doubt it is NOT a fun time.  Here are some tips I read and did.. and some I wish I had.

1. Try to schedule the E.E.G. for the morning.  Your child will be asked to be sleep deprived, so if you can get an appointment for around the time he/she has been up for 4-5 hours is ideal.  They had us keep Trey awake 2 hours past his bedtime the night before and get him up 2 hours early the next morning.  We had the appointment time of 9 a.m. but it didn't actually start until around 10 a.m.  So he was tired.. this was a good thing.

2.  Do not feed your child a meal prior to the test.  I gave him a sippy cup of milk when I got him up early.. that was it.  I was happy with this decision.  He didn't have a full tummy during his extreme meltdown when they were attaching the electrodes... and he was able to drink during the test itself and calm down.

Playing in the Waiting Room
3.  Prepare yourself.. when you can't prepare your little one.  I think the most heart-wrenching part of this procedure is knowing that there was no way to prepare Trey for what was happening and why.  He didn't understand at all.  One minute he was in the colorful children's waiting room with lots of fun toys and a giant fish tank.. he was running around giggling and playing like he had just entered Disneyland!  Then the next minute we go behind the big doors to a stark white sterile little room with bright lights and beeping machines everywhere.. and the "mean" people with gloves started messing with him.   This was so hard for me!!  I did my best to hold back the tears.. I wish I could have prepared myself for this. :(

4. Bring some of your child's very favorite things!  Super-duper important!  Like I said, we were put in a white sterile little room.. with what look like a dental chair in the middle where my husband sat holding our little guy and was told not to let him down.  So distractions to keep him calm and occupied were a must!  Here is what we brought for Trey:
     *3 of his very favorite Thomas Trains.. one in which he held with a tight fist the entire time.
     *"ABC" app on my phone that he loves and a Thomas app he had never seen before.
     *portable DVD player with his favorite Thomas movie.. the ultimate lifesaver!!!
     *sippy cup with milk.. (we brought him his favorite Fruit Loop cereal too but he did NOT want to eat)
     *favorite blanket.  Cheetos the bear would have come too but, sadly, he is still missing.

5.  The electrodes are not as bad as they look!  This was something that gave me a lot of anxiety prior to the test.  I really did not think Trey would be able to handle having them put on his head.  This is the same little guy who has a complete meltdown when we try and give him a haircut.  We literally have to wrap him in a sheet.. daddy holds him as best he can while I do the buzzing.  It's so emotionally draining for all 3 of us that I usually use the smallest setting on the clippers just so we don't have to do it very often.

So how were they going to attach about 20 different electrodes onto his head and keep them there for the entire 2 hours?!  I didn't think it could be done.. but it was.  Now, don't get me wrong.. this was the horrible, rotten, awful part of the whole thing.  It took Daddy holding him firmly in the "getting a haircut" position while sitting in the chair, a nurse holding his head still (sorta), Mommy kneeling next to him singing the ABC song and rubbing his favorite silky part of his blanket on his cheek, and the other nurse quickly doing the 1-2-3-4 steps of electrode attachment.
Trey getting the electrodes attached...
1. mark the spots
2. dab with glue
3. attach electrode
4. wrap the head in guaze.. DONE!

The whole procedure took probably 10 minutes.. I was impressed.  Trey did scream and cry and turn red and almost threw up (which is why I was thankful for not feeding him breakfast!).. but it only took him a few minutes to calm down.  The lights were turned off, Thomas DVD was turned on, sippy cup in mouth.. and blanket in his hand.  He was going to be ok now. :)

6.  Don't sit in view of the EEG machine while testing is in progress.  Why?  Because if you are anything like me, you will stare at it and worry every time you see a little dip or change in the pattern.  I kept wondering what was it? a seizure? a normal brain wave change?  Some were little changes... some were big black dark squiggly changes.. and the technician dude just sat there staring at the screen.  Never changed his facial expression.  Even when he periodically leaned towards the keyboard and typed something on the screen.. he never said or did anything.  I wanted so badly to ask if he saw anything concerning... but I knew better.  I wish I hadn't sat there.. I should have been watching Thomas instead.

EEG Brain Waves

7.  Don't schedule the E.E.G. on a Thursday or Friday.  Why?  Because the technician dude won't tell you anything.. and you have to wait a couple days to hear back from the neurologist for results.  Trey had the test done Thursday... today is Sunday.  The waiting is a big fat bummer!  I am hoping we know something tomorrow.

8.  Don't over-GOOGLE it.  While as I hope you found this blog by googling and found it helpful.  There are a few I read that were helpful as well.  Just try not to over do it.  I usually do and end up freaking myself out finding the one unreliable sight who reported a fatality or permanent brain damage from getting an E.E.G.  There is a lot of crap on the internet!

9.  Realize the importance of knowing.  Going through with the test and waiting for the results has made me realize the importance of knowing whether or not Trey is having seizures.  Of course I pray he isn't.. but I realize he possibly could be having them.  If he isn't, great and at least we know.  If he his.. then we can now move forward to the next step of getting him the right medication to control them.  This is a serious test with serious results either way when helping your Autistic child's development.

Trey calmed down

10.  Enjoy the little moments...they help!  That evening after a stressful morning then a good long nap at home, Trey was happy and silly like nothing had ever happened.  Daddy and I were still a little numb and traumatized by the whole experience.. but when Trey would take little breaks from playing with his toys to look at us with those big brown eyes and say "hi" in his sweet voice and maybe give us a snuggle hug if we got lucky... we knew we did the right thing by going through with the E.E.G.... and Trey had forgiven us.


  1. Boy, I remember that test! It took an MRI to definitively diagnose James' epilepsy but the MRI was nothing after this one! James, at that age had a head full of wonderful brown curls. It took forever to wash the glue stuff out.

    I hope that the results bring peace to your family and that you are able to move on in your journey.

  2. I just found your blog through A Legion for Liam...which I love BTW. I have insomnia and can't sleep so im surfing fb on my droid cell. I have a 6 year old nonverbal angel with autism, spd, allergies and gut issues. My daughter and I went thru a 4 day video eeg a few nonths back. Awful to say the least, but thank God he is not having seizures. We also wrap my grandson in a bedspread to buzz his hair. It is a nightmare for all 3 of us. If you com up with any other ideas, let me know. I am on fb so you can friend me if you like.

    We live in centerville, ohio, and pretty much know all. The docs at both dayton and cincinnati childrens hospitals. Going to try to get some sleep. Sandra budde