Help me get up to speed re: seizures in teens
December 21, 2018 4:55 AM   Subscribe

I think my kid might be having seizures. The first doctor's appointment has been made. Help.


The kid: 15 years old, in good health, and in very good physical shape, though had a major injury earlier this year which involved multiple surgeries. Is now 95% healed from that with ongoing physical therapy. Bright, energetic, well adjusted, etc. Has had to take multiple rounds of antibiotics this year due to the injury and another small infection. He's getting a minimum of 8 hours of sleep per night (though he has always been a guy who needs more sleep, and I see that he's happier/has a better day if he gets 10 hours). Probably doesn't drink enough water each day, though I send him to school with 22oz that is gone by the end of the day.

What happened: Six weeks ago we were talking at home and he suddenly had a moment of feeling sort of woozy. He sat down, and then within one minute was "better" -- meaning, he was talking to me about how weird that felt. He described it as a "feeling of remembering a dream." Light confusion, and some foggy brain afterward. At this moment he was on antibiotics for a small infection, and he also told me he hadn't had any water to drink in hours. We chalked it up to dehydration, the antibiotics, general tiredness after a tough few months of injury recovery, etc. This happened again a couple of days later, equally brief, but when kid said he'd taken the antibiotic on an empty stomach just before this I chalked it up to that.

Today: perfectly normal morning, kid walks up a few steps to grab something and then just sort of bends over and holds onto the railing for a few seconds. I watched it all unfold -- he was fine, and then he just sort of gripped the rail, and then he spoke to someone and walked down the stairs by himself with no trouble. He then told me he felt "foggy" and repeated that he was feeling "as if I am remembering a dream, or in a dream." In the ten minutes afterward, he told me he was feeling very anxious, but not too badly off to go to school. He also told me the same thing had happened to him the day before while at school, but he'd forgotten about it by the end of the day. He is in a period of a lot of physical activity at school right now which will be completed by tonight.

I asked my son if drugs or alcohol might be involved -- based on everything I know about him and our relationship, I believe he was being honest when he emphatically and immediately said no.

I started thinking about these and realized these "out of it" moments might be seizures.

Doctor situation: I spoke to the pediatrician's office -- they suggested going straight to a neurologist, as these moments are so intermittent it's likely the pediatrician won't see anything. I need to jump through Hoop 1 and get a referral from a GP so this will be covered by insurance. That appointment is tomorrow. And given the holidays I wouldn't be surprised if we can't get a neurologist appointment until after January 1.

What should I be thinking about next? I could take him to the ER but I don't know that it would help, given that he's mostly normal and these are so intermittent. They might just kick us out with a referral to a neurologist...

Would appreciate advice or personal anecdotes about: what happens next, what this sort of symptom could mean for my kid, navigating talking to doctors about intermittent symptoms that might not be visible when they are looking at my kid, and anything else you think I should know.

I'm also definitely open to the fact that this may be absolutely nothing, and I'm just going a little Mom Crazy + Internet Googling Symptoms Crazy.
posted by anonymous to Health & Fitness (19 answers total)
When I was a teenager I kept having dizzy spells and they thought it might be seizures so they referred me for and EEG, which turned out normal.

In retrospect what was probably happening was low blood sugar, which I have struggled with ever since, but am now managing thanks to dietary changes (eating a big breakfast and plenty of protein with every meal).
posted by mai at 5:40 AM on December 21, 2018 [2 favorites]

No epilepsy, but I had a lot of neurologist appointments as a teen getting diagnosed and and treated for a different condition (Chiari malformation).

Something your kid can do now that'll really help a lot is to keep a journal. How much water/food he's had in a day, any meds he takes, amount and type of physical activity, times he's feeling symptoms and what those symptoms are. The neurologist will almost certainly ask him to start keeping one anyway while he's being diagnosed--starting now will give you more history to work with.

It would also be very helpful for you to do the first half of the appointment in the room with your kid and then leave the room for a while. My mom never left the room and subsequently I wasn't completely honest answering my doctor's questions (not drugs or anything for me, but personal habit questions, etc, that weren't my mom's business). You might even say openly at the start of the appointment that you plan to give your kid and the doc appointment time together and you're here to help with any initial questions and to take notes, so the doctor knows to hold certain subjects for later.

Another note: I was put on topamax for a while to help control symptoms. I don't know if they still prescribe topamax to kids but its intended use is to treat seizures. Topamax was a really bad drug for me. I got every single one of the bad side effects, even the think about suicide one, and almost no benefit. If they put your kid on topamax just please read that side effect list thoroughly and check in with your kid often. (I'm not trying to scare you, just I really wish my parents had taken it seriously and not yelled at me to keep taking my drugs.)
posted by phunniemee at 5:45 AM on December 21, 2018 [11 favorites]

Seconding mai, I had/have similar issues that were much worse as a teen, starting around that age, and it turned out to probably be blood sugar issues as well. They have mostly gone away, probably due to diet changes and growing out of teen metabolism craziness. At the time we did a lot of blood tests and heart rate tests, but eventually it was decided that unless I was having a 'grey out' in the chair tests wouldn't show anything. It was also suspected that dehydration played a role.
posted by neonrev at 6:11 AM on December 21, 2018

Parent who has been in this situation. If he has any school or other not-with-you activities before the appointment, it's not a bad idea to VERY low-key make sure a friend or supervising adult who is with him has your phone number.

Once you're there: An ongoing journal like phunniemee describes can be very useful, as can your observations. Along with an EEG, it's possible he'll get referred for an MRI -- if you're not familiar with the restrictions and limitations on MRIs, it might be worth looking at them before an appointment for one. Also, write down any questions you have -- it's very easy to walk into an appointment like this and have what you need fly out of your head.

Also, re phunniemee's note: There are a number of first line anti-seizure medications with minimal side effects. If at some point it is helpful to you to talk to another parent about that topic, please feel free to contact me.
posted by gnomeloaf at 6:27 AM on December 21, 2018

I had something very similar for a few years around the same age: I'd be living life normally when suddenly I'd feel bizarre, as if that moment was something I had already experienced in a dream. Sometimes I would throw up afterwards, sometimes I would pass out briefly. Did a ton of tests to try and pinpoint the issue, but never could reproduce it on command. Parents thought it was low blood sugar, but that was disproven via my dad's glucose meter. Eventually they stopped occurring. I later heard that a male cousin also had similar episodes in his teenage years, so perhaps there's an element of genetics in play. Either way, they're certainly frightening at the time.
posted by Meagan at 6:31 AM on December 21, 2018

Something like this happens to me sometimes. I call it "feeling far away." Also sometimes when that happens I have this sensation like my hands are trembling, but they're not. Anyway, I also think it's low blood sugar, usually. I've never seen a neurologist for it, though. I am not a teenager. I don't recall when these started. They're not as frequent as your son is having them.

Obviously I'm not saying "don't see a nuerologist" because it's worth getting checked out, but maybe if you're going to your GP to get the referral, also get a blood sugar check -- ask if you can get the kind of test where you fast, take blood, they give you a sugary drink and then take blood an hour later and two hours later. That's normally for diagnosing diabetes, but when I did that test it did show my blood sugar below expected at the two hour mark, so it can show that. Also, if this process ends up triggering an episode, then you will have one more clue to work with. And as a bonus you could probably do the blood test tomorrow.
posted by If only I had a penguin... at 6:40 AM on December 21, 2018

You can buy an otc blood sugar testing kit and you or he can check his sugar during these episodes. You can also call the school nurse and tell them this is going on but they might be weird about checking his sugar without a doctors order so maybe just have your kid do it himself.
posted by pintapicasso at 6:59 AM on December 21, 2018

In addition to monitoring blood sugar, check his blood pressure as well to see if he's having syncope episodes.
posted by IndigoOnTheGo at 7:01 AM on December 21, 2018 [5 favorites]

I'm epileptic, I have a kind of epilepsy that shows up in teens (JME) and I had my first seizures when I was your son's age. I'm not saying that your son is having seizures or that he has epilepsy -- I'm not a doctor and I have no idea what you or your son are experiencing -- but if you have questions about what epilepsy can be like in teenage boys please feel free to MeMail me.

For what it's worth, I'm 51 now with teenage boys of my own, on good meds and largely seizure free, so it's not a horror story, but I can tell you what to be careful of!
posted by The Bellman at 7:03 AM on December 21, 2018 [1 favorite]

Nthing that this sounds like low blood sugar (just to reassure you.)
posted by DarlingBri at 7:10 AM on December 21, 2018

Our 11yo had some of the same symptoms (she described them as being 'not there' or 'zoning out', but she could still do things, so it wasn't a full physical seizure). We and the pediatrician thought they were focal aware seizures, but it turned out that for her it was mono, caused by exhaustion etc.
posted by true at 7:14 AM on December 21, 2018

Agree with keeping an event diary and seeing the GP for basic labs. A random or even a fasting glucose may or may not be helpful; if there's a way you can get the sugar checked during the event that's best.

Also strongly encourage you to see a neurologist. A pediatric neurologist if possible, but they are rare birds, so a general neurologist who sees kids is fine too. Does your kid ever have weird jerking movements in the morning, like such that his toothbrush or cereal spoon flies out of his hand? Or does he feel weird when driving down a highway lined with trees when the sun is shining through them (i.e. when there's a stripey pattern of sun and shade on the road)? The neurologist will want to know this stuff. Show her the event diary.

He'll probably have an EEG and and MRI. There are specific instructions for an EEG, depending on what the neurologist feels is going on. For instance, they might shine a strobe light at him; they might ask him to hyperventilate. He may need to be sleep deprived the night before to increase the yield on the study. (This means you'll be sleep deprived too, keeping him awake, so get a second adult to drive you guys to and from the study).

Until you rule out epilepsy, seizure precautions apply. No driving (not clear if he has started learning to drive yet?) No swimming alone, no baths; showers are fine. No climbing on ladders. Keep doing what you're doing in terms of staying hydrated (is there a way he can refill the water bottle at school, maybe at lunchtime? 22 oz is about half what I'd want to see for a young guy who is physically active), adequate sleep.
posted by basalganglia at 7:26 AM on December 21, 2018

I'd feel bizarre, as if that moment was something I had already experienced in a dream

Same, and the summer I was 15 it was happening sometimes a dozen times a day. It's called déjà rêve (like déjà vu, but means "already dreamed" rather than "already seen"). It appears to mostly be just a brain development thing (and it happens much less as we age), but probably the neurologist will do baseline tests, look for anything obvious, maybe suggest a few lifestyle changes, and then if it continues to be disruptive (though from your description it isn't hugely so now) another set of tests to see if there are changes.

It's possible his physical response to them will be less "something bad is happening/I'm sick" and more "THIS weirdo shit again, huh, okay now it's over") once he knows what's going on. My response was always more euphoric, like I was experiencing something amazing, but that one summer I did start to feel like I was losing my mind.
posted by Lyn Never at 7:37 AM on December 21, 2018 [2 favorites]

Going through something similar with my teen right now. The pedi sent orders for an EEG and MRI that was easy to do (not invasive or time consuming) that bypasses waiting for a neurology appoitnment. The EEG tech said that staring seizures are often induced during the EEG by having patient blow on a pinwheel. Obv a 40 minute EEG would not rule out other seizures during the days but this is our experience with the EEG. Also, in my family, we can feel funny and dizzy on antibiotics, I think it is a mild antibiotic allergy (?) or intolerance. I suspect with my teen that some the symptoms are from not drinking enough water, eating enough, etc.
posted by RoadScholar at 7:42 AM on December 21, 2018

I agree with many of the comments above: I have had similar symptoms in the past, and it is low blood sugar related for me.

This sort of thing happened much more often to me when I was a teenager, with crazy teen metabolism and a not-as-great diet. It happens very rarely to me as an adult now.

You should absolutely get your kid checked out, but hopefully it makes you feel a little calmer that there is a likely and common explanation. I hope it goes well with the doctor appointments - best of luck.
posted by warble at 8:49 AM on December 21, 2018

Also if it's a little bit of reassurance, while there can be a wrapper of "feeling weird" around seizures, absence seizures are pretty distinctive beyond a weird feeling if you're looking right at them when it happens, which it seems like you have at least a couple times.

For now - because yeah, you're probably not getting in to see a neuro for weeks - have a plan with him that when he does have the weird feeling again, to:

- Tell you (you can try using a code word or phrase that'll get your attention pronto)
- Look at you in the eyes/face if at all possible so you can see his face
- Keep talking

You will see an absence seizure if he's doing that, because he'll just...stop...for a second. If his eyes move at all, make a note of whether they're moving in a seeing way (like the way someone might look around a little desperately if they are nauseated or freaked out about the sensation they are having) or if they seem to be moving in a stutter or rhythmic manner.

Other things to watch for are aphasia (using the wrong word and not realizing, searching for a word that should be easily in reach), a stutter or slurring or just odd pronunciation as if his tongue isn't behaving, face or head/neck twitch or tic or spasm.

Since he'll likely be home/around you more over the holidays, I'd say let him sleep as much as he wants but to have a high-protein meal within 30 minutes of waking, and to consciously choose some protein and hydration* as companions to anything that might way spike his blood sugar like holiday treats and junk food.

*I've become very big on electrolytes, particularly the good stuff for runners that has measurable quantities of bioavailable magnesium and potassium in them (I use LyteShow, there's also HiLyte and EM Drops and others which you might find at REI or sporting goods store, but for this weekend you can likely pick up some Nuun fizzy water tablets at the drugstore or Target, if you want to brave that nightmare, or for a couple of days he can go through a lot of Powerade/Gatorade just to get something in him). Growing bodies, especially at the warp speeds of 15-year-old boys who are probably just about to rocket up into their full adult height, burn through mag/K/calcium/sodium in amounts that even a decent diet can't necessarily keep up with.

This is *probably* nothing, which is not very comforting, but at the very least you can make use of the hang time by logging absolutely everything you/he/family notices about the circumstances around these events. If you can get him to log intake and sleep, maybe in an app like MyFitnessPal or similar, I have no doubt the GP and neuro would love to see it.
posted by Lyn Never at 10:22 AM on December 21, 2018

Agree that keeping a diary is a good idea and that this could be a combination of antibiotics, dehydration, and low blood sugar, especially since he's in a period of intense activity at school in addition to physical therapy (PT appointments can be a real workout!). He might just be hitting a wall? My 18 year old stepson recently had an episode like this on a long hike with lots of elevation gain, legs still working but suddenly "out of it" and pale. A Clif bar, water with a Nuun tablet, and 15-minute break revived him enough to hike the remaining 5 miles to the trailhead.

Another thought: has he had visual symptoms during these episodes? It might not be obvious. Along with a sense of disorientation, my migraines begin with a very subtle visual distortion that's only noticeable when I try to read. If it's a migraine, it isn't necessarily followed by a headache. My husband just gets visual migraines with 15-20 minutes of flashing lights but no headache. (I unfortunately do get the headache and nausea.)
posted by kiripin at 11:35 AM on December 21, 2018

Although as other people say, there are lots of non-seizure things this could be, even if it is seizures, doesn't mean he will always have them. My brother had three or four grand mal epileptic seizures over a couple of years when he was a teenager. He's nearly 40 now and never had another one. Doesn't even need to take medication any more.

But yeah, what your kid is experiencing sounds a lot like what I feel when my blood pressure drops from standing up too fast, or like a migraine aura-y thing (which you can totally get without having the accompanying headaches).
posted by lollusc at 5:38 PM on December 21, 2018

It's worth talking to your GP besides just getting a referral. I'm not his doc but I wouldn't immediately asume seizures, sometimes brief arrhythmia episodes can make one dizzy and out of it. This might or might not be relevant here but think it's worth it to keep an open mind. Also if the episodes happen at home maybe it would be possible to get a video recording on your phone (might not be possible if it's just a few seconds).
posted by M. at 10:41 PM on December 21, 2018

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