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.
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.
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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. :)
ReplyDeleteThank you Angie. Perfect way to describe - unchartered territory. And it can be different for every individual.
ReplyDeleteAfter 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.
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.
ReplyDeleteSorry 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.
ReplyDeleteLove Joan
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.
ReplyDeleteJust wanted to say hi and that we'll be following your blog. You can check out Maddie's too if you like.