Seeking info, advice, or suggestions about my baby's seizures

Well my daughter Ivy just turned 1 and she started having focal seizures. She was admitted in the hospital and was released the next day on keppro The EEG results came back saying there was some slowing on the right side as well as epileptiform discharge on the right side while she was sleeping. I wasn’t really given an explanation as to what that exactly means. She had 13 seizures the day she was admitted. The Drs we’re unable to do an MRI due to the fact she couldn’t be put under anethesia because she had a bad cold. I have to take to her to get one done in two weeks. She wasn’t given an actual diagnosis. I’m usually pretty calm in these situations but I am freaking out. I’m actually scared shitless. She’s just a baby. And the long term side effects of her meds are concerning. Any advice or suggestions or information would be greatly appreciated.

Until a doctor comes around, I would point out that there is a ton of helpful information about seizures and (potential) epilepsy diagnosis at these sites:

They include explanations of what different EEG results mean, why an MRI is used, discussion of Keppra and other drugs, among a bunch of other things. They might help.

You have my sympathy. Sounds scary. My understanding is that often there is something fixable causing seizures, and even when that’s not the case, most people with seizure disorders are still high-functioning. Best of luck to you.

It does sound scary and I see that Keppra is one of the few anti-convulsants that are authorised for use on babies. My wife, who was a paediatric nurse, tells me that most babies get better by themselves (grow out of it) but it is very frightening when it happens.

We prefer that real-life medical questions go in IMHO rather than General Questions. Moved.

samclem, moderator

Nothing to add other than I’m sending you good vibes and best wishes. That sounds scary as heck but you sound like you’ve got a good head and are handling it. She’ll thank you when she’s a healthy 25 year old. :slight_smile:

Odds are as bob++'s wife stated. They will search for a reason, for something that provoked the seizure, specifically something structural as can be found on the MRI, and assuming that they do not find anything, she will be labelled as having “epilepsy” which just means having recurrent (or high probability of recurrent) unprovoked seizures. Seizures due to a provocation are not epilepsy so no more specific label can be attached yet. For now just right sided focal seizures localized to wherever they were localized to and without without generalization. If a she has normal MRI, which she most likely will, she will be treated with medication adjusted as needed and monitored and if while treated she stays seizure free for some period of time will have a repeat EEG. Based on the repeat EEG results and her course she will then be weaned off of medication. Yes childhood epilepsy is usually outgrown. Of course having the MRI prove that there is nothing scary provoking the seizure is hard to wait for and the fact that it usually does find no scary cause will not help you sleep well until the result is back. Still the vast majority of the time there is nothing scary there and medication is usually well tolerated without major side effects.

They should have given you specific instructions on what to and what NOT to do for a next seizure. If they did not please call them and ask for instructions. If you feel you did not get the explanations that you understand from them also call and ask for more information. Sometimes docs think we have explained better and more completely than we have. Demand better from us when we fail.

Best wishes.

Oh. Another word you may hear. “Partial” is just another word to say “focal” or “localized”.

Have you been able to get the MRI done yet? Was it reassuring? Did you get more information from your doctors?