Hi, I am new here and my son has just been diagnosed

lco120

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Hi everyone, my name is Lara and my son (31 months) was just diagnosed with myoclonic seizures this past weekend. Our journey began on Dec 26th with a tonic/clonic seizure that self resolved but was the scariest thing I have ever ever seen. We went to the ER, etc.

We followed up with EEG 2 days following his seizure. There was some bilateral posterior slowing but not 'sharps' (not sure what that means). Docs weren't too concerned, thought it might be posictal (spelling?) activity.

He came down with a fever/virus within 15 hours of that seizure, but since he didn't have a fever a the time, they called it an 'uprovoked seizure', we hoped it was a one and done. We followed up with the ped neurologist on Jan 7th and she said nothing to do now with only one occurence. Phew - or so we thought.

Fast forward to Jan 21 and we start noticing 1-2 second eye rolling upwards involuntarily. We started to track it and saw it happening a few times a day. He didn't have arm or body jerks, just the eyes. Then on day 6 he did the eye thing again and he seems bothered by it and let out a 'mommy' cry. We know something wasn't right so we headed to the ER at CHOP.

We were admitted and my son had a VEEG overnight and after the readings they diagnosed him with myoclonic epilepsy. I've since spoke again to the neurologist to confirm the diagnosis and she said it's generlized benign myoclonic epilepsy. I've been scouring the internet, only to find the scariest of all stories.

My son is developmentally on track, the only problem he ever had was ear infections (with tubes put in at 18 months). I am really struggling with coping.
My heart is aching so much I can't believe it.

We started him on a low dose of the generic Keppra this past monday and stlll see the eye rolls. We are scheduled to increase the dose this weekend. I might have seen a head bob today, I wrote it down, not sure. I am coming here to find some shoulders to lean on and some words of wisdom and hopefully success stories.
 

Fedup

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lco120

Lara you are one brave parent, this cannot have been easy to deal with and the fact there is a bit more to go, there are a lot of people here like myself who grew up with epilepsy and there is no problem, well no problem except the epilepsy. Your son will be fine and you will protect him like all parents do, there is a possibility (possibility) that he may grow out of this but it is not a certainty.
Your son will develop fine of course he have colds and God knows what else, I am sure he will find some mischief like I did. Ask any questions you want there are a lot of people here who can identify and are willing to help in the mean time try to relax, you cannot fix everything no matter how hard you try.
 

CathyAnn31

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***hugs mama***

I bet that is scary, I can't even imagine since I'm the one with epilepsy.

Hopefully the eye rolls stop, or atleast slow down with the med increase.
 

jyearta

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Welcome,

Your are doing great, finding this forum, researching.

You mention he has/had an ear infection. Infections are a trigger for seizures.

It sounds like you are already keeping a diary.

Hope you find answers to help you and your son.

You are not alone----HUGS-----
 

jendiore

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You might ask your neurologist about Topamax. It worked wonders for my son. He was having petit mal seizures at age 10, which looked a lot like what your describing with your son with the eye rolling. The Topamax greatly reduced and eventually completely stopped these episodes. He is 18 now and back on Topamax for a series of grand mal seizures over the last two weeks.

If it helps you to know, as scary as it is right now, it does get better! Sorry your having to go through this!
 
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