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

Parenting an Adult Child with Disabilities

  "Parenting an Adult Child with Disabilities" is a series on eSpeciallyBen. As Ben approached 18, it was clear our role changed as parents. We needed to help Ben transition into adulthood. These stories are meant to assist other families who face, or will face, some of the same challenges. Talking About the Future Guest Post - Matt Wilson Legal Guardianship, Medicaid and SSI Researching Group Homes Questions to Ask at a Group Home Visit Referral Packet for Group Homes Getting Assistance from a Care Manager From Group Home Placement to Discharge Reaching for Independence

He Ain't Heavy, He's My Brother

After my post, Brotherly Love , I received an email from a reader who reminded me of this song. I knew the song, but had never really thought about the words and the meaning behind them. I looked it up and thought others might see the lyrics in a new light.   He Ain't Heavy, He's My Brother The road is long With many a winding turn That leads us to who knows where Who knows when But I'm strong Strong enough to carry him He ain't heavy, he's my brother. So on we go His welfare is of my concern No burden is he to bear We'll get there For I know He would not encumber me If I'm laden at all I'm laden with sadness That everyone's heart Isn't filled with the gladness Of love for one another. It's a long, long road From which there is no return While we're on the way to there Why not share And the load Doesn't weigh me down at all He ain't heavy, he's my brother. He's my brother He ain't h

Kids Who Volunteer

On Saturday, Kidz That Care , a nonprofit organization in Charlotte, visited Ben's Easterseals UCP group home to "Pack the Pantry" with groceries and beautify the front porch with flowers. Ben joined the group outside and watched them plant poinsettias, sweep leaves and wipe down tables.  I wasn't sure how engaged Ben was in the activity but when I tried to take him for a walk, he made it clear he wanted to stay and observe. He hugged the one adult with the group (not the photo above).  When the group was leaving, Kidz That Care asked to take a photo with Ben. I noticed how Liam, one of the teen volunteers, kneeled next to Ben rather than stand behind him. Usually people not comfortable around Ben are hesitant to get close. I was impressed with Liam's willingness to bend down and be at his level. Then Ben leaned in for a hug and held on to Liam for several minutes. Ben's hands were tight around Liam's neck and he kept his head on Liam's shoulder. It w