November is National Epilepsy Awareness Month. The color for Epilepsy Awareness Month is purple.
The last two years in honor of this month, I've shared with you our experience with Epilepsy while also providing the basic facts about epilepsy and seizure first aid. Feel free to re-read those posts here and here. This year, I want to literally show you what Jenelle's seizures look like. Below you will find a series of older videos I uploaded to You Tube so you can literally see what we are fighting.
Video #1 - Grand Mal:
This video shows Jenelle's Grand Mal. Jenelle hasn't had many Grand Mals in her life, maybe 10 at the most. When she was 18 months old she was tested at UCLA to see if she was a brain surgery candidate. During the testing, we were lucky to capture her Grand Mal on video. This clip is a video of the actually VHS tape from UCLA, which is poor quality. This is only 2 1/2 minutes into the seizure that went 10 minutes requiring oxygen. It starts as a Grand Mal, then moves into an Absence Seizure about 40 seconds into the seizure. The "screaming" you hear from Jenelle during the seizure is involuntary - she was never in any pain. I will caution you, the first few seconds are graphic.
Video #2 - Absence Seizure:
This is a short video clip of Jenelle's Absence Seizure. Jenelle was approximately 3 years old in this video. The typical presentation of an Absence Seizure is that the patient appears to be dazed and confused. Sometimes you can see twitches here and there and sometimes patients pick at their clothes, grind their teeth, or smack their lips during an Absence Seizure. This is one of many seizures Jenelle had that evening during a very bad "cluster." Jenelle suffers from "Cluster" seizures where her seizures come on one after another without much relief or down time. If clusters are not controlled, they can eventually lead to Status Epilepticus, or constant seizure state.
Video #3 - Absence Seizure with Hand Twitch:
This video is of another seizure taken the same night as the above video clip. This was later into the cluster. As you can see, Jenelle is completely out (almost like being asleep) and her hand is twitching.
Video #4 - Infantile Spasms:
This is a very short clip from Jenelle's first Video EEG when she was 10 months old. We were pretty new to seizures, and as you can see I'm practically oblivious to her spasms. The "arching" you see in this video is the infantile spasms, and she did it repeatedly. Infantile Spasms is diagnosed when a specific pattern of hypsarythmia is seen on the EEG.
Video #5 - Tonic/Absence:
This is a video we captured to show Jenelle's neurologist when she started having Tonic (stiffening) seizures and longer absence. The clip ends at 3 minutes, but this seizure went longer and we eventually used Diastat.
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6 comments:
I feel like you have done more in this post for creating awareness than anything and everything one can find anywhere else on the internet. Thank you.
Thank you for sharing so much with everyone. She is such a little sweetie.
First - thank you (and Jenelle!) for this post. For just putting it out there, and educating people.
Second - look at that tiny little baby!!! Who is such a big grown-up-five-year old! They grow ups SO fast.
Kelly-
This is great info. Originally, I found you as I was looking for infor about seizures. Ivey didn't have seizures until she was about 8 months old - that we know about. She had so many other issues with might not have been able to tell (which is an entirely different story).
Janelle is one incredible little girl, and I am so happy to know her through you. Our little angels are tough.
If you don't mind, I will link your site to Ivey's - many of my friends aren't sure of what to look for to even know if Ivey is seizing. She has a variety, but she gets the hand twitches alot.
Thank you!
My daughter had her first seizure when she was 3. It was an absent seizure with hand twitch. She has since had one Grand Mal and the rest have been regular absent seizure and she looses all control of her functions. She is 10 now and she is taking Keprra twice daily and doing well.
The videos, although scary, are very helpful to me because it will help me identify immediately when the seizure takes place.
Thank you for this post. It means a lot.
Amanda Davis
Thank you for the information you have shared , your little jennell`s is an angel..God bless her
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