Re: Re: tonic seizures & vibratory seizures

June 19, 2004

Hi - My daughter has had tonic seizures that began about 4 months ago.

Prior to the onset of these tonics - she has infantile spasms, complex

partial seizures and head drops. The head drops and these tonics are

resistant to medication. She started keto on 4/19 and the tonics

disappeared during the 2nd week of keto. Unfortunately she did not

tolerate the diet and we had to stop -about 3 weeks ago we began

weaning. The tonics are back. They start like a wave in the abdomen -

almost as if someone is reaching in through her back and pulling her

abdominal muscle out her spine - does that make sense? She crunches

forward and extends her arms - her eyes look up to the left. She does

not breathe during this which lasts 5-10 sec. If I catch the start of

it I can stop it most times by forcing the muscle to move in another

direction. For example, I lift her chin up gently but firmly and try to

get her to look at me. Separately she also often has an abdominal

undulation - the stomache moves like a belly dancer - in a way that you

could not do voluntarily. She cries during this and says boo boo. I

too, looked them up and saw them referenced under autonomic seizures.

My neuro has not talked much about them. I'm not sure what to tell you.

My daughter cried constantly on keto - the neuro thought that the

keppra could have been the culprit. We have come off keto and reduced

keppra. I think he was right. We are going to reduce keppra - hopefully

get rid of it and then restart keto. Anyway the interesting thing is

that every time we reduce keppra the tonics are better (fewer and

shorter). I'm hoping they leave because it is frightening.

Good luck keto works and I found it easier than I thought it would be

but for whatever reason my daughter (behaviorally and cognitively) did

worse on it. I will try again but on little or no medicine this time.

Maureen

mom to Bryn 5 IS, & wacky eeg

>

>>

>>> Jenn,

>>> Don't have the answers to your question about tonic vs. tonic-

> clonic,

>>> but

>>> it's so funny because I got on line just to pose the exact same

>>> question:

>>> Can someone describe

>>> the difference between tonic, clonic, and tonic-clonic. I've

> read the

>>>

>>> textbook descriptions, but I'm having trouble " seeing " it in my

> mind.

>>> Also,

>>> does anyone know what a " vibratory " tonic seizure is?

>>> Thanks

>>> Chris

>>>

June 19, 2004

Keppra, huh? My little Hannah (5 1/2 months old) was recently put on keppra in

addition to her Phenobarbital. I was told by my neuro the keppra would

specifically help with the myoclonic and tonicclonic seizures. It has only been

a week and I have seen little change, but they said to give it 1-3 weeks. Last

night was very bad. I honestly don't think the seizures ended. She also had her

second round of immunizations so that could have had something to do with it.

What are head drops...besides perhaps the obvious. Hannah has very, very, very

little head support and control. Since they don't know if her disease is

metabolic or mito yet, I chalked the head control as something muscular with the

mito diseases. Could this be seizure activity?

Somedays it certainly seems like there are more questions than answers....