Could this have been a seizure?

[mysticmomma]

One seizure does not equal epilepsy.

[unsinkable]

One seizure does not equal epilepsy.

 

 

I know that.

 

I found my DD in status epilepticus one night. That's how her epilepsy began.

[mysticmomma]

This is basically what my daughter looked like for 30 seconds or so. Another 15 seconds with no twitching but full body rigidity and her twitches were always less pronounced.

[mysticmomma]

http://m.youtube.com/watch?v=2m0qkKSpq9k

[unsinkable]

Please don't think I'm arguing with you. I want your DD to be OK...no seizures, no epilepsy, just a one-off kind of glitchy thing.

 

That is why I said I wouldn't trust a ped or GP to diagnose it...I'd want an EEG and an experienced neuro to read it.

 

 

[mysticmomma]

Sorry. Feeling defensive. :(

[unsinkable]

Sorry. Feeling defensive. :(

 

I don't blame you. It's scary.

 

I guess I suck at communicating tonight. I wanted to be hopeful, not make you feel worse. I'm really sorry.

[sheryl]

I do remember 30 days before my dd had her grand mal, she was in the shower and she said her head felt like a fragmented jig saw puzzle. I hope you find answers. All epilepsy patients have (had) seizures, but not all seizures become epilepsy. A single seizure can occur to anyone. Epilepsy is defined by a person having at least 2 seizures. There are symptoms that can contribute to the educated guess of a gp or ped. that a person has seizures/ But, I do agree with unsinkable on this...that it will be "defined" by the neurologist. I'm not sure how they are going to handle this. They may say to wait on an eeg until and IF you see "evidence" of possible additional symptoms. After my dd's grand mal she was rushed by ambulance to the hospital and released the same day. They performed blood work, ct scan and a week later an mri. She was sent to a neurologist and they did perform an eeg. BUT, we did not notice seizures until 2 months later. Since that time to the present she has 2 eeg's a year. She is seizure-free on meds and the doctors are confident that one day she'll be successfully weaned. Please be aware to not assume. You may never see another seizure and that would be good. BUT, if your dd does have epilepsy you will see additional symptoms and you may not know when. I know a woman locally whose son, now 19, had nocturnal seizures. My dd had one grand mal and then it evolved (because seizure "types" can change) into absence seizures. HTH! She'll be fine. But, in time, I encourage you to have an eeg performed. Make sure it's a pediatric and not adult neurologist. There is a sleep deprived eeg (patient and parent are awake for much of the sleeping hours) and an ambulatory (patient wears battery pack/electrodes to sleep for "usually" 1 night and then goes in the next day to return equipment. A typical scenario. HTH!

[Whereneverever]

I hope you can get in to see a ped neuro soon. I'm sorry you are going through this- it is terrifying. When my dd started having seizures I was terrified. There are a lot of moms on here with experience with seizures. Do you live by a children's hospital? Within a few hours of one? Sometimes that's a great place to get the ball rolling on this.

[Whereneverever]

 

 

I don't blame you. It's scary.

 

I guess I suck at communicating tonight. I wanted to be hopeful, not make you feel worse. I'm really sorry.

 

 

I'm trying to message you, clear out your box. :)

[speedmom4]

I also agree that your dd needs to have an EEG. You are correct that an EEG could look normal if she doesn't have a seizure during the test. But, that isn't always the case especially if this seizure is only the first one you've seen. For instance, my son has had many EEGs and rarely do they capture an actual seizure but they do show abnormal electrical activity called spikes. The spikes show (from what I understand) that my son has had multiple seizures in the past. Our neuro has described EEG results like pictures of a fire. The actual fire is the seizure but there is smoke that occurs before and after a fire that does show up on the EEG.

 

I think the MRI and blood work were good places to start but you need a ped neuro to help manage seizures. Hopefully she'll never have another one and it's never an issue again.

 

Good luck!

 

Elise in NC

[mysticmomma]

It's only 11% full?

[Mergath]

I also agree that your dd needs to have an EEG. You are correct that an EEG could look normal if she doesn't have a seizure during the test. But, that isn't always the case especially if this seizure is only the first one you've seen. For instance, my son has had many EEGs and rarely do they capture an actual seizure but they do show abnormal electrical activity called spikes. The spikes show (from what I understand) that my son has had multiple seizures in the past. Our neuro has described EEG results like pictures of a fire. The actual fire is the seizure but there is smoke that occurs before and after a fire that does show up on the EEG.

 

I think the MRI and blood work were good places to start but you need a ped neuro to help manage seizures. Hopefully she'll never have another one and it's never an issue again.

 

Good luck!

 

Elise in NC

 

 

Yup. I have photosensitive epilepsy, and I've had abnormal EEGs though I wasn't having a seizure at the time. And I'm no expert, but I imagine it would be good to have a baseline EEG too, to see if there are any changes over time if this keeps happening.

 

My ECGs are completely off too, even though my heart is fine. I think all the electric signals in my body are messed up. I should see if I can light up a light bulb with my brain or something. :p