Skip to main content

Wired Again


In January, Ben had a video EEG at the hospital. In a nutshell, Ben was hooked up to 20 wires for 24 hours in a hospital room with little to no nursing assistance. So when we had the "opportunity" to get more information about Ben's seizures, I figured we would try the Ambulatory EEG. New experiences are good, right? Plus, torture at home has got to be better than torture in the hospital.

All 20 electrodes took about one hour to apply.
 
If you have not done an Ambulatory EEG, I hope this will help. Here are photos of the process and some things we did to make the experience tolerable for all of us.

1. Bring help to the doctor's office. Gluing the wires to Ben's head was difficult again - he knew what he was fighting for this time! I also needed the help for the car ride home - Ben could have done a lot of damage to the wires while I drove home.

Ben was held down by three of us.

2. Keep your regular routine. Once home, we planned activities for Ben to do so the information on the EEG may be more indicative of Ben's lifestyle. We took him to the YMCA in his walker, then to Smelly Cat for a milkshake and then home for relaxing. The activity also helped get his mind off of tearing those wires off his head.



3. Take shifts. Ryan took the early night shift while I slept. Ben fell asleep on the sofa, and I relieved Ryan at 1am. Although I could sleep a bit, Ben tossed and turned so much I kept worrying that he was tearing the wires. He did manage to break 2-3 wires by the end of the 16 hour monitoring.

Ben had his usual at Smelly Cat, the local coffeehouse.
4. Ask for help with glue removal. At the video EEG, no one offered any suggestions on how to get that darn glue out of Ben's hair. Another mom blogger finally gave me some tips after she called their local Epilepsy Center. This time, the technician used a special solvent while at the office and Ben came home glue-free. I was glad, because I was not looking forward to a repeat performance of the the peanut butter concoction my husband used last time to get the glue out.
 

I preferred the EEG at home. It was done on the weekend, so any sleep lost could be made up the next day without the mad rush of school and regular routine weighing down on me. And Ben did have several "events"  - he fell forward a dozen or more times and his eyes fluttered a few times too. So hopefully, he gave the doctor the information she needs to offer options about Ben's care. We meet with the neurologist in May and will get the full report then.

Comments

  1. Hi there,

    I JUST happend to find your blog because I was searching for material on ambulatory EEG's- a picture of Ben popped up and I wanted to get your thoughts on something. My self and a a few others are getting our MBA's in healthcare managment at The George Washington School of Business- our project this semester is to come up with a product that could serve an unmet need. Long-story short we've come up with developing a wireless ambulatory eeg using dry-pad technology (no glue, no wires, slips on like a hat, over 46 channels etc) Again, this is a hypothetical project- but our reserach is showing that this is not far from reality. One of our sections is explaining the emotional/social needs of a device of this nature..and that picture of Ben explained everything. I was hoping I could share your story or parts of your story with my team and if you're intrested perhaps ask you some more detailed questions- its difficult to find someone who is going through exactly what we are trying to propose and any help would be amazing. Please let me know your thought! Sincerely, Talia LaPushin (lapoosh@hotmail.com)
    so sorry for taking up so much commentary space..couldn't find an email address!!! thank you

    ReplyDelete

Post a Comment

Thank you for reading my post. I appreciate you taking the time to comment. If you wish to contact me directly, please let me know and I will email you.

Popular posts from this blog

Impromptu Pet Therapy

  Ben met Doodle today. One of the staff at his day program brought him in. Ben loves dogs and these photos made my day. 

Parenting an Adult Child with Disabilities: Talking About the Future

Ben in the middle with Dad (left), Carla Payne with Aging Care Matters and Mom This is the first of several posts about parenting an adult child with a disability. Ben will be 19 this summer; I am learning along the way. As always, I hope to pass on resources and wisdom. Discuss the future.  If your adult child is able to participate in planning for their future, ask them how they envision it. Let them draw a picture. Ask them to tell you a story. Maybe they can sign a few words that mean a lot to them. Find a way to get them involved. How do they see themselves living? By themselves, in a group home, with another family or with a sibling? Where do they want to live? In another city, in an apartment, in a house? How far away do they want to live from family? What level of independence can they handle? Do they want someone to check in on them? Do they want to find a job? Do they need a job coach or supportive employment? Who will help them with their finances? Is there someone they tru

Catching up with Ben

  I wish I had more time to write on eSpeciallyBen . Ben teaches us lessons on a regular basis: Smile often, give hugs, sit down and savor the moment, grab someone's hand to let them know you care and laugh with abandon–even if it annoys your brother. Ben will be 18 this summer. He attends high school in-person and enjoys seeing his classmates and teachers each day. In the photo above, it's 6 a.m. and he can't wait to get on the bus. As for most people, the pandemic has been tough. Ben's in-person activities, camps and programs were canceled. He's happy to see grandma when we met on a Charlotte greenway or park. Ben seeks out social interactions and being quarantined away from friends and family was even more difficult because he didn't understand why. Ben's teacher sends me photos of him throughout the week. They just finished a rousing game of catch here.  Thank you for following eSpeciallyBen. If you want to see what I'm working on now, find me here .