Jamie had an EEG today to see if she is still having seizure activity given her lack of a visible seizure over the course of the years. Her neurologist is ready to start weaning her from her Keppra if the EEG shows proof she is seizure free. She has been on the same low dose of Keppra since diagnosis in 2008 which is promising that she might have outgrown her particular type of epilepsy. Benign Rolandic Epilepsy also known as BRE is one of the ones that a child may outgrow. Since our involvement in the epilepsy world, I have learned to be grateful that if she had to have a form of epilepsy, it was this one. I hear so tragically of children who pass away due to Sudden Unexplained Death in Epilepsy (SUDEP) and others that find no relief from their seizures.
I wanted to share this picture in case there was a little one getting ready for an EEG to show that it does not hurt. It may take a long time to prepare for the EEG but it's really pain free. Jamie had to be sleep deprived which made her a bit cranky but she did get to have a 30 minute nap while she was monitored. The technician was very nice and explained everything thoroughly to her since it had been awhile from her last EEG. She had a 48 hour overnight EEG in 2010 which we had a lot of fun together believe it or not. Overall, the EEGs are not bad and Jamie came out smiling. No news yet on seizure activity as we have to wait for the neurologist.
The Procedure:
- After Jamie had her head measured, her hair redone, lots of giggling, the electrodes were placed on their strategic spots along with two on her chest.
- She had to close her eyes, open her eyes and repeat once more.
- She then had to look right, look left, look straight and repeat.
- She then had to breath fast for three minutes.
- She was then told to close her eyes, the lights were turned down and the strobe light was turned on intermittently.
- Her final test was to sleep for 30 minutes while the technician monitored her brain activity.
To learn more about SUDEP, check out the Epilepsy Therapy Project.
Good luck to little Jamie and her family. There's no greater feeling than getting off those drugs!
ReplyDeleteThank you, Heather! We have fingers crossed! :)
ReplyDeleteThis is great for someone who has a child that might be facing this. Thanks for sharing!!
ReplyDeleteThank you, Cynthia! :)
ReplyDelete