Communities

Moms of Epileptic/Seizure Disorder Kids

All Communities > Moms of Epileptic/Seizure Disorder Kids > dose anyone know what kinda seizure this is?

dose anyone know what kinda seizure this is?

Brittanie - posted on 12/22/2010 ( 3 moms have responded )

5

12

My daughter has a long seizure history starting at 7 months with IS then later diagnoised with Interacable epilepsy then the IS can back. She has been having episodes where in the middle of doing things she starts to shake her head really fast (looks like she is saying no) She also started to have Facial Grimicing that comes in clusters (it looks like it hurts) she Closes her eyes really tight pulls in her lower jaw and pushes out her front teeth (almost like a dog would who is growling) she is on Viganbran and topmax and since she was first diagnoised her seziures have been very hard to control there still doing testing to find a cause!

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms

3 Comments

View replies by

Netsi - posted on 12/22/2010

3

79

My daughter was diagnosed with IS at six months. She has been on sabril since and hasn't had any spasms that we could detect since her first day on sabril. However, she also does the "no" shake. She is 13 months and does it less often now. It scared the hell out of me when she first did it! However, if you search it online you will see that many kids do it and dont have IS. My daughter did it while having a 24 hr eeg and the doctors said it didn't register as a spasm.

Beverly - posted on 12/22/2010

13

36

It sounds like they are possibly petit mal seizures? Do they cause her to shake her whole body or "drop" from having them?
Have you talked to her neurologist about these? Topamax never helped my daughter. She hasn't tried the Viganbran yet. Tifani's started out as petit mal that generalized. They then went to the full Gran Mal seizure type that caused her to lose consciousness. She would drop to the floor & all of her little body looked like it was being shaken like a rag doll. :( If you have a video camera or even a regular camera, our neuro had us video tape them as she had several different types at the same time.
Good luck on all the testing. My prayers are with you & your family.

Amy - posted on 12/22/2010

2

20

If you are near either Houston or Memphis, I would suggest you try to see either Dr. Angus Wilfong(Houston) or Dr. Wheelis(Memphis). They are the top 2 Pediatric Epileptologists in the country. They will more than likely be able to help you. Also, you might want to look into Dravet Syndrome. Its a long shot, but you never know...

Want to find out the opinions of this community?

Add Poll