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First EEG

needs: Her first EEG.

I had a little nudge since my girl was 6 weeks old. She slept so much, but “you never wake a sleeping baby”, and she was so distracted but “she’s just dreamy” and then later, she was slow to roll, sit, walk but “they all get there in their own time”.  Every time she was out of step, I secretly yearned for the key that would unlock things for her. So, when her Marx brother’s paediatrician suggested she needed a brain scan, part of me was relieved. He gave me a bit of paper and said I would need it on the day and it fell into my mother-lawyer bag between a file and a bottle of bubbles. Dr Oddball said he would make the appointment and I would be contacted by the hospital. After hot chocolate, I took her to school and I went to work.

Busy family-work life distracted me for 3 weeks. We heard nothing, but that was back in the days where we believed no news was good news. I contacted the hospital. After some transferring and hanging up, I navigated my way to the right department. I learnt there was a long queue for an EEG and she wasn’t in the queue.  After googling EEG, I tried to call Dr. Groucho and was phone blocked by his gatekeeper. She adamantly insisted the request for EEG had been made 3 weeks before. I called the hospital again and they confirmed a request had not been made.  I called Dr Zeppo’s gatekeeper. She said to leave it with her. I thought I already had.  After I cooled off, I called the hospital to repeat the transferring and disconnections until it was confirmed the request had just been made. My gratitude swam down the phone. 2 hours of chasing and my girl was in the queue. With mission accomplished I was ready to hang up and barely caught the fact that there was a 3 month wait and even then, she could be bumped for emergent cases. For a second it seemed like I had spent a morning trying to get something, and once I got it, it moved out of reach.

Months passed, and the concerns that lead to an EEG request became more prominent because I couldn’t get her one. Finally, the day arrived. I grabbed her from school and drove to the hospital. I had 3 work calls to make before we got there so I was playing with her hands, driving and arguing about contracts. We slid into a park after my third lap of the car park. Pulling on her little hand while finding change, getting a ticket and bolting into the hospital was a means to an end. Until, she stopped at the door. I had overlooked that the test was in a hospital.  I realised I hadn’t told her what to expect. I tried to give her little facts while working out which lift, what corridor and following the pink floor lines. By the time we got to neurology, she was wary. The nurse beamed at my girl, who warmed up a little. I beamed back and was shut down pretty quick with a “You’re late, we were about to cancel.” I looked at my girl apologetically and she glared at me.

I handed in my crumpled bit of paper from Dr Harpo and after some waiting around a nurse showed us into a room with a hospital bed and we were told to wait.  We looked around the room. I was hungry for facts and she was scouring every corner. The walls were littered with stickers, mobiles, bears and movie posters.  There was nothing new. It was all old and sad and looked like the kind of things grandparents think kids will like and maybe they do, but not for not long enough to warrant sticking up. My problem-solving brain went into hyper drive. Why doesn’t a toy store or a movie distributor sponsor this place? I snapped back to the room, to her. Her eyes were shiny, and they skipped across her Disney friends, even the ones she had outgrown who were there waiting for her. 

A different nurse arrived and was organising things while asking a lot about her brother, school, pets (we should get one of those I thought) and my girl chatted back.  I could see she was not at ease but when the nurse explained the next step was sticking little metal buttons on to my girl’s scalp connecting her to wires that were connected to a machine, wonder spread accorss her face. It was confirmed that this would not hurt, and she ruffled with relived. My mind scattered to a dark place, an unwanted thought I was letting them to do this to her and I didn’t know what was coming.

That EEG went for a little over 60 minutes. She was exposed to strobe lights. She was asked to blow windmills to the point of hyperventilating. Her eyes darted to me, desperately as distress engulfed her. I didn’t know the aim was to create a perfect storm for seizures so they could be recorded. Suddenly, that part was done and without time to reflect the lights were turned out. Sleep readings were next and we were left alone to get her to sleep on command.  I let her suck her thumb and stroked her head. I whispered into the darkness until her little mouth gave way to her heavy exhale and her sleeping breathing wafted over the room. Once she was out, I twisted to put my head beside hers.  Tears flowed as I gazed at her, plugged into a machine, hopefully dreaming.

The lights were turned on. The buttons were efficiently removed and we could go. She was dazed and frayed at the edges. I was conscious they needed the room, and rushed to dress her uncooperative little body. She held my hand tightly and even though I hadn’t carried her in an age, I lifted her snug into my neck as we charged to the car. Tucked in, she fell asleep before I shifted into reverse and I had one of those silent driving cries. 

means: What I wish someone had told me about an EEG

Before the EEG

An EEG (electroencephalogram) is a medical test used to evaluate the electrical activity in the brain.

It is just a representation of the day the test was performed.

A single line in an EEG report can dictate a course medication, assessment or therapy. A single line in an EEG can produce a diagnosis, heaps of appointments, side effects, and questions. It can also give you peace, understanding and a plan.

In the public system, there is little opportunity to repeat an EEG, so make that day a priority. Private paediatric neuro testing is not as available as you would think. The best thing about the public system is that the children’s hospital is set up for kids.

Be brave and ask for a copy of the referral for the EEG so you can chase it up.

Follow up with your doctor’s gatekeeper straight after the appointment. She, it is always a she, will be the one to send it. Ask her when she usually sends it and offer to chase it up. This can prompt her to fax/email it while you wait. If it is a 3 month wait, let the time start.

Get to know the names and roles of the neurology team at the hospital. Collect snippets of direct lines, preferred emails and fax numbers to follow up the referral.

Diarise and follow up the request with kindness. There are lots of worried parents wanting EEG’s, and not all of them are kind.

Once you get a confirmed appointment or day:

Book a return appointment with the specialist to discuss the results. (Avoid waiting for the report, which is sitting at the referring doctor’s office who is yet to contact you with the results.)

Ask about the EEG process. Each hospital does it differently. Ask if there is anyone you could talk to prepare your child. Ask for time periods, room description, sleep requirements, snack requirements, and waiting periods on the day.  Questions like this often trigger contact with a play therapist. There are great departments in hospitals designed to assist kids through difficult experiences.

If they send you a handout, read it and call to fill the gaps. While you are calling, get the low down on parking, location, cost and distance.  This removes the avoidable mosquito bites stress of the day.

Week of:

Dial down the family calendar, get a yum dinner in and some family time.  It’s so good to put a big deposit in the nurturing bank before an EEG, for both the patient and the carer.

Pack a test bag. Snacks, treats, and distraction. Throw in a surprise. I always take a book because sometimes she wants to hear my voice and I am at a loss for what to say. Pack a familiar blanket and a beloved teddy for the sleep component. My girl’s pooh bear has had as many EEG’s as she has.

In the days before the test You Tube some videos of an EEG. Watch a few, as procedures change across hospitals.  There are lots of short videos made for and by kids.  This switched my girl from patient to expert.

The night before the instructions may require you keep them up really late and then wake them really early. For us, it was up until 11.00 and wake at 5.00pm. This is hard for everyone and the tiredness makes the aftermath more emotional.

On the day of the EEG

Clean hair, super squeaky, clean hair. Makes it easier for them to stick the bits on the scalp.

We wear our good luck clothes. Comfy light pyjama akin clothes.  I clear the whole day and arrange childcare. My beloved steps in as well. Its an all hands-on deck family day.

Take out or Frozen dinner is sorted.

Parking change and directions are ready to rock.

Get there super early, park, wander, take in the hospital and use the toilets.

Get to neurology early and check in with all the people you have called. Introduce your little one to them. These people could be helping you over the years.

In the room make sure you introduce everyone to your kid. Sometimes it is only one person. Sometimes it is more than one. They are busy but a name reminds them they are working with a little one and can slow the pace. Get your kid talking with the techs and nurses, repeating their names. If you establish communication quickly, your child may feel comfortable speaking up.

You won’t be able to hold, cuddle or tickle them during the test. For my tactile girl it is important I let her know and give her a good-bye cuddle. I assure her I will be in the room but leave pooh bear to do cuddles.

The dark side.  Our last one began with an easy round of eyes open-eyes close. Then your already sleep deprived kid, may have strobe lighting flashed close to their eyes, followed by using a happy windmill to foster hyperventilation before being asked to sleep on command before observation during waking up. As a parent this can be hard to watch.

When the test is over, ask about the process for the report.  There is another queue here and the report is the goal. Confirm how long it normally takes and request they send a copy to your GP and the referring specialist with a business card for each. Confirm when you are seeing your specialist, you know that appointment you made? The response is usually “they will have the report by then”.

You can ask for the report (because really you can ask for anything) and they can give it to you. Despite hospital policy, sometimes when you ask, you will get it.

Before you leave, thank thank thank these guys.  It is important to acknowledge their role. My girl went through a stage of making friendship bands. That is her way, leaving kindness everywhere.

After the EEG

Leave the test with purpose. You and your little one, have plans. Have a test day ritual. It doesn’t have to be Luna Park. It can be a song, a particular salted caramel éclair, a hot wheels car, a bunch of flowers. Have something that says “I’m sorry this happens to you, and you did a good job”. Have it ready. You can’t go shopping after, you are going home.

They will tell you an EEG has no side effects. Seriously, at the very least lack of sleep causes some gross side effects in a family.  We notice she can be hung over. The combination of nerves, strobe lighting and sleep deprivation takes its toll. We plan for doona island. All the doonas in the house, on the couch, all the family and Star Wars. Somewhere between Tatooine and the Daygobah System, sleeping breathing kicks in and it feels like us again.

tools:

at the point of referral:

  1. ask your doctor’s gatekeeper when she is sending the referral and for a copy
  2. follow up referral with the Hospital
  3. make note of the Department and direct line
  4. diarise to follow up weekly

once you have an appointment or confirmed day:

  1. book a return appointment with your specialist
  2. ask the Hospital about the arrival time and the process. If they don’t offer, ask for a handout

the week of your eeg:

  1. keep family calendar light
  2. pack a test bag with your dude: snacks, comfort, diversion.
  3. YouTube an eeg for kids

the day of your eeg – before:

  1. squeaky clean hair and good luck comfy clothes
  2. take-out or frozen family dinner
  3. parking and directions sorted
  4. early arrival to navigate the area and find the toilet
  5. introduce your dude to everyone involved

the day of your eeg – after:

  1. ask about the report process
  2. tell them when your specialist is seeing you and provide their business card
  3. ask for a copy of the report- just in case you get lucky
  4. be thankful, really really thankful

After your eeg:

  1. treat time, for you and your dude
  2. future proofed family night of rancho relaxo