Skip to main content

Wired Once More

"Haha, you think you can hold me with these stinkin' sheets!"

Ben's new neurologist ordered a 30 minute awake EEG, a fairly routine test for people with epilepsy. I brought reinforcements in the form of Kim and Bob. Kim is Ben's longtime caregiver and Bob is his favorite character on the Bob the Builder show. Even with backup and distractions, they brought in another technician to hold him down. Ben dislikes anything on his head, and so he fought to take the wires off his head and kicked to try and get off the bed.

"I will let you beat me this once!"
We had called ahead to ask about using a papoose, but we were told that they no longer provided one, but they could provide us with sheets to use. Kim was the ingenious one and wrapped Ben like a burrito. 

Something I did learn through this process was about Clinical Seizures and Sub-Clinical Seizures. Ben has both - his clinical seizures are atonic and this means they are characterized by head drops. The atonic seizures have been controlled with medication since May 2012. On this EEG, the technician did notice frequent sub-clinical seizures, which are most likely normal for Ben. I will ask more questions about this when we get the results in a few weeks. Most likely this EEG will provide the doctor with a baseline for Ben's brain activity and will not give us much additional information.



Overall, Ben did a great job and did not suffer all that much. The technicians were quick, and it was all over before we knew it.

Related Posts
Wired Again
Real Deal: Video EEG
It's Not a Toothache
Curve Ball




Comments

Popular posts from this blog

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's 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

A Lesson on Supplemental Security Income

In October, I received a letter from Social Security Administration saying that Ben no longer qualified for SSI AND we owed a very large over payment for two years of SSI that Ben did receive. The letter showed that we owned two of the same car. I knew this was wrong and immediately wrote a letter. I thought it was a computer glitch. Over the past five months, I have met with Social Security, spoke with several people over the phone and wrote countless letters providing documentation to show the cars we actually owned and filed appeals for the decision to revoke Ben's SSI during the two year period they think we owned these two cars. Tomorrow I have another meeting. I am hoping we can get this straightened out. This situation has caused a lot of stress for us and has taken a tremendous amount of our time trying to unravel the problem. I have not written a post in almost a month, partially because my brain power has been consumed with this issue and the bathroom saga (qualifies

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