Seriously, try not to think of the worst-case scenario. I know it’s scary, and I’m so sorry you’re going through this.
I’ve had a seizure disorder since I was in my early 20s - it developed while I was living in South America. It was terrifying, but it has been controlled with medication for quite some time - haven’t had one since a breakthrough seizure in 2008 when I found out the hard way that hormonal birth control can make me metabolize my meds too fast. Before that it had been six years.
My triggers have changed since I started having seizures - at first it was sleep deprivation and possibly altitude. Now it’s primarily hormonal as far as I can tell, though it’s hard to know since they’ve been controlled and there’s no way in hell I’m going to experiment on myself by going off my meds to see what happens.
Anyway, hang tight and let us know what the doc says. It’ll probably be a wait and see kinda thing, but it’s good he’s getting checked out. Having had seizures much of my adult life, I had never seen someone else have one until I did one day in my neurologist’s office. After that day, it almost seemed harder to be the one standing by, helpless. At least having a seizure I don’t have to wring my hands, wondering what to do.
Guin makes some very good points. Really, all you can do is stand by, let it happen and make sure your little one is safe if it happens again. If it goes on for more than a few minutes, take the little 'un in immediately (of course, if it happens again, get them evaluated again).
Nothing you describe sounds like TS. Seriously. Really, the intent was to give you real numbers that the odds are very very good that everything IS okay.
Although I once met a family in the ER after a child had a first afebrile seizure and shook his hand to notice multiple ash leaf spots - pointed them out to the parent saying “Oh yes, we call those his ‘unbirthmarks’ … I have them too.” Mom was normal and child just had seizures needing medication. (Autosomal dominant with variable penetrence.) Never anything more.
No, no, no - not at all! I really appreciate your and everyone else’s help, and the numbers you quoted were indeed very reassuring. I was just being a nut. As is my way. I know this. And now the internets know it. :rolleyes: But I’m already over it, and ready to roll with the punches.
Thanks again, everyone. I will keep you posted, but in a much less insane fashion, I promise.
It’s okay, freaking out is part of the job description when you’re a mom.
From my own experience and others I’ve heard of, the wait for a diagnosis is the most nerve wracking part of the entire ordeal. It sounds bad, but I was so relieved when it was confirmed that yes, my Mom had cancer, and here was the treatment plan. (She made a full recovery, btw.) The stress is really awful right now, but it will get better, and soon.
For what it’s worth, I have two cousins who had childhood seizures and then outgrew them. I knew one kid who had a more serious cause for his, but it was treatable and he’s living a normal, happy life. (He graduated from college this year, I believe.) Deep breath, it’s gonna be okay.
Sigh… well, we still don’t know anything for certain yet. They didn’t do any tests; it was basically just an intake appointment. They took our family history and the kid’s health history, and had us schedule appropriate testing. But they did talk with us for quite a while, and gave us their initial impressions:
It’s most likely not tuberous sclerosis, the thing I was freaking out about. The doc did look at his under-pigmented spot, but said that since there’s only one (and it’s the wrong shape), and the kid has been developing normally so far (and he has, as far as we can tell), it’s not how he would expect to see something like that presenting. They are going to do blood tests, to check for this and any other genetic conditions, but they don’t think any of those are terribly likely.
It may indeed be epilepsy. They said that several issues in our family history commonly show up in the histories of people with epilepsy (my sister had a seizure when she was young, I’ve had depression, and both my husband and I have siblings with various mental problems, etc.). So apparently, the kid has a higher than average chance of this being the case. They said if he has another seizure, they will diagnose epilepsy. I think they said that they may also diagnose it regardless, depending on the results of his EEG and/or MRI, but I was really tired, so I may be remembering that incorrectly. In any case, if it is epilepsy, that’s totally fine. I mean, it would suck mightily, but is treatable, and our little guy can still have a healthy, awesome life. I’ll gladly take that over, say, a brain tumor.
It’s also highly unlikely to be a brain tumor.
So, now we have to do the testing. High-res MRI (for which he’ll have to be sedated), EEG, and blood test. First is the EEG, and they want him to be sleep-deprived for it, so we’ll have to wake him up a couple of hours early that day. I just about cried when they said that, because he’s not been sleeping well since the night before the seizure.
But at least I think we know why now: his cough got worse and he spiked a fever Tuesday night, so we took him to his regular pediatrician after seeing the neurologist, and… he has a raging ear infection, in both ears. Little guy’s really on a roll. He just got over one a few weeks ago, the poor kid. He seemed to feel better during the day, but then puked and ran a fever again last night. But at least he managed to get some sleep. I didn’t - I had to hold him the whole night - but I was glad to do it if it meant he could get some much-needed rest. And he did; he slept in a couple of hours longer than normal and woke up bright-eyed, bushy-tailed, and ready to play.
So that’s where things stand: he’s on antibiotics for the ears, he’s got some very un-fun tests coming up, and he may have epilepsy… but for the most part, he’s still a bright, cheerful, funny bunny (and yes, as noted above, I mean that figuratively; he’s actually a small human :)).
I’m so sorry to hear about this. I can tell you from personal experience as an adult that a sleep-deprived EEG blows goats. Luckily they don’t force you to keep the kid up as long as they do an adult (I had to be awake a minimum of 20-24 hours), but I imagine a kid would crash long before an adult would. Still, if it gives you answers, it’s worth it.
If he does have epilepsy, perhaps the trigger was the ear infection coming on. Or maybe even the ear infection caused it. Or maybe it just happened. Who knows? My understanding is that the cause of seizures is very frequently unknown, though I’ve read in a few places that a particularly severe ear infection can cause one, but that information is primarily anecdotal. I hope you get the information you need and can use.
According to Medline, a febrile seizure is often the first sign of an illness like an ear infection (in kids who are prone to febrile seizures, of course - not in every kid) and usually happens in the first 24 hours, not necessarily with very high fevers.
Thanks for this! In retrospect, I suppose it’s possible, although when they took his temp rectally at the ER, it was 98.6 on the dot, and that was surely no more than 15 minutes after the seizure (I am so very glad we live so close to the hospital). But yeah, now that we know he could have already had the infection at the time, maybe it’s related.
Even so, I think they’d still want to go ahead with the testing, given the family history, as would I. But if they don’t find anything else, I’ll bring this up again.
Let me chime in here - my family has members with serious clinical depression (to the point of it being fatal) and a number who had febrile seizures as infants or toddlers and not one has been diagnosed with epilepsy or had a seizure past toddlerhood. So yes, it can be an indication but it’s not destiny.
Don’t let them slap a label on the kid unless it’s really necessary, though. I mean, by that definition my oldest living sister, who had 2 or 3 seizures as an infant (she was a preemie, that doesn’t help either) would be labeled “epileptic” even though she hasn’t had a seizure for almost 60 years now and hasn’t been on meds the last six decades, either.
Sure, if he’s genuinely got the problem there’s a lot that can be done to give him a normal life, but unfortunately in this world a mis-applied label can dog you for life and cause unnecessary problems.
Take a deep breath. As someone else said, the testing and waiting for diagnosis phase can sometimes be the most stressful. Everyone will be OK in the end, either way, it’s just that one alternative means you’ll have to learn a few new things, but you can do that.
Thanks for asking, but no news yet. This week, he had his EEG, and got blood drawn at The Suckiest Lab On Earth, but we haven’t gotten the results yet. He has an MRI next week, and I think once that’s done the neurologist will go over everything with us.
But the good news is, he’s had no more seizures, his ear infection seems to be on the mend, he’s mostly back to sleeping through the night, and he generally seems cheerful and sweet as ever. So if he’s happy, I’m happy.
Seizures are terrifying, but the seizure itself is usually not particularly dangerous. The danger comes from the environment the seizing person is in. The scariest seizure call I ran was on a woman who sensed her seizure coming as she pulled up to a red stoplight. She tried to put the car in park, but didn’t have enough time before the seizure took her and she idle-drifted into the intersection against traffic. She miraculously didn’t get broadsided by any vehicles, and didn’t stop until her car rolled over the curb and hit a bus stop bench. There was very little damage and no injuries, but it could have been so much worse.
The good news is that epilepsy is very treatable with lots of medication options. Epileptics who take their medication rigorously are about as likely to have a seizure as non-epileptics. So in the unlikely event that your son has epilepsy, he will still surely live a perfectly normal life. Like others have already said, it would not be extremely unusual for him to have had a single seizure that does not require any particular treatment for epilepsy.
I don’t think I replied to this thread earlier, as our son had febrile seizures - so we had a pretty good idea of what was up. But I know its very scary and I know that there is some chance you’ll be told “don’t see anything wrong…we will see if it happens again” and how frustrating that is.
(We had to look as our son’s febrile seizures weren’t typical. Apparently, one is normal - six over twelve hours that continue when the fever has broken is a sign that there might be problems…or maybe not…He’s 13 and they ended at two, so maybe not).
Well, kind of good news, in the “no news is good news” sense.
First and foremost, no more seizures so far, which we’re extremely glad about. I always have in the back of my mind that it could happen, but I don’t feel like it’s looming over us any more.
Also:
Nothing abnormal was found on the EEG. We did the MRI just before Christmas. The radiologist who performed it did a preliminary review of the results with us, and said everything looked totally normal there, too. They did find something of note in the genetic workup: if I recall correctly, the letter said there was a duplication of a particular sequence, of a length which was outside the parameters of normal, and partially within a segment that can be clinically significant. But we have no idea what, if anything, this actually means.
And this is the “no news is bad news” part: we haven’t heard from the neurologist yet about the genetic test (and I’m not sure whether we got the final “okay” on the MRI, either). We expected them to contact us, but after a while, we went ahead and called them, and almost a week later, we still haven’t gotten a response. My husband was going to go to their office and yell at them yesterday, but couldn’t get out of work in time, so hopefully either he or I will have time today.
But that aside, it really looks as though it may be a case of, as Dangerosa said, “don’t see anything wrong…we will see if it happens again”. And that’s fine by me.
It’s good to see he’s doing well. Odds are really good you guys will never hear from this again. If he does have a long term seizure disorder, physiological and psychological stress can lower your seizure threshold. If it took back to back ear infections and the wear and tear of the holiday season to push him over the edge without medication, that speaks really well for the odds of keeping him well controlled.
Controlled epilepsy is a pita, but really not a big deal.
