Help from Moms with Kids with Seizures - What would you do if you were me? - Page 2

[MusicCityMom]

Originally Posted by pregnant@40 

I could definitely be wrong, but isn't it true that, 1) febrile seizures do NOT lead to grand mals or abnormal EEGs, 2) seizures progressively cause brain damage in themselves, and thus it is dangerous to allow them to continue untreated, and, 3) the course can become more severe at any time? Just by the way, how was your son's second seizure characterized (ie. absence seizure)?

Best wishes to you, this must be quite frightening to go through as a parent.

His first seizure, which was accompanied by a fever was a grand mal, his second seizure, which had no trigger that we can determine, was an absence seizure.  The second seizure concerned our doctor more since it appeared that there was no trigger whatsoever.

As our doctor described it to us....the seizures themselves are harmless (risks associated with falling and aspirating not included)- just a symptom of a bigger issue, which is the abnormal brain activity.  He explained it in terms of building a skyscraper...the abnormal activity could potentially (though  not in all cases) lead to cracks in the foundation of the building which you don't know about until the building (or brain) gets bigger and bigger and then those cracks which didn't matter when the building is small matter a lot more as the building grows.  Of course, as with all things medical, this isn't always the case.  There are some people who live their lives without medication and live with several seizures a year and have no development issues whatsoever but the majority of people who have seizures tend to get more of them and they tend to get more severe the longer left untreated.

As I am sure you all know - it is pretty miserable either way.  Medicate and I worry about the long term effects, which aren't entirely known, about how this medicine affects a developing brain.  Or leave him unmedicated and we risk injury from the seizures (aspiration, fall etc) and the potential that the abnormal brain waves lead to damage down the road that either will be harder to treat or potentially untreatable.  The unknown factors on both sides of the equation are huge and frustrating.

I am attempting to take solace in the stories I have heard of people who have epilepsy who are leading happy healthy lives on medication.  My brother in law has been on epileptic medication since he was a small child and he went to Yale for college so there are some success stories out there.

Similarly to anj_rn we have discussed an exit strategy with our doctor.  Annual EEGs and if they are normal we take him off and after two years seizure free we may even take him off with an abnormal EEG depending on how the EEG looks.

We are starting him on the medication Saturday morning, so we have a couple days to monitor him before he heads off to school Monday morning and will take a day at a time.

[pregnant@40]

Thanks for all the info! You guys are knowledgable.

MusicCityMom, I have a friend whose son started seizures around age 3, and is now 6. There was a lot of trial and error w/ meds, but the seizures are now very infrequent (almost gone) & he seems to be a very happy kid. I remember he was miserable at the beginning, for the seizures were scary in their unpredictability; he had to wear a helmet, and due to the seizures, doctor appts, and I guess family response to the whole thing, had resulting behavioral issues for about a year. But now an outgoing, happy, secure kid. From reading this thread, it seems that many are going through it. Best wishes to you!