Skip to main content

Video EEG Update

I never gave much of an update about what results came from the Video EEG Ben had in January mostly because I will not have all the information until we meet with the neurologist next week. The doctor's initial note to us said Ben had 52 rhythmic bursts during the 24 hour period that we were at the hospital. I have Googled rhythmic bursts and none of it made a lot of sense to me, so I am fine to wait.  Often reading information on the internet leaves me feeling more scared and confused than more informed.

Most disconcerting is that the seizures which I describe as the "falling forward seizures" are back again. I can see Ben's energy level and bladder control decreasing. He's already bumped his eye and head several times this week. These are the same things that happened last fall when he started these seizures. It really sucks - I thought we were in the clear.

I am unsure what the doctor will do when we see her. Change medication? Call for another EEG? After the hospital visit last time, I may be okay trying the at-home EEG. At least I can sleep in my own house and Ben can move around.

And did I mention Logan had minor out-patient surgery on his face yesterday?

Never a dull moment here.

5 More Days to Vote!

Comments

  1. I just read Ben's story and his diagnosis'. What unchartered territory you are in. Seizures scare me to death, so it's remarkable to me how strong you are. :)

    ReplyDelete
  2. Thank you Angie. Perfect way to describe - unchartered territory. And it can be different for every individual.

    After writing this post, I realized that it would be best to just make an appointment for the ambulatory EEG - the one where they hook Ben up with the electrodes and he goes about his regular business. I am waiting for an appointment now, but feel good that I moved ahead with the procedure.

    ReplyDelete
  3. Wow, what a crazy time! I agree with you, searching online often leaves me more confused and scared than when I started. I'm glad you feel better since you made the appointment for the ambulatory EEG.

    ReplyDelete
  4. Sorry to hear Ben is having seizures again. Hopefully the doctor will have some good answers for you. You are all in my thoughts and prayers.
    Love Joan

    ReplyDelete
  5. I just found your blog and have only just read about his diagnoses and a teensy bit more. But I just wanted to introduce myself and let you know my daughter has the same falling forward seizures. We call them atonics, because of the loss of tone when she has them. They can present as just her head falling forward while seated, or she can fall flat on her face while standing. I know how terrifying it all is. My daughter is 4, and is extremely delayed so we can't explain to her how unsafe walking is.

    Just wanted to say hi and that we'll be following your blog. You can check out Maddie's too if you like.

    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

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