Absence Epilepsy? Anybody Familiar? (1 Viewer)

[General Malaise]

Hi Friends -

One of my 8 year old twins was recently diagnosed with Absence Epilepsy. Essentially, he will space out for 30 seconds or so and just kind of go.....blank, for lack of better terminology. These can happen a handful of times per day. He is on medication and has been for a month or so, is seeing a neurologist and we're trying to get up to speed on this one as it came out of nowhere for us. Just figured I'd ask the sagacious folks of FBG for any thoughts or experiences or even schtick.

My boy is a champ, taking everything in stride. He is VERY active, so his mom gets pretty worried when he does flips on the trampoline, plays hockey in the street with roller blades or gets on a bike. I worry too, but I don't want to put him in bubble wrap just yet as I think his active life is a feature and I love that about him. But I also don't want him to get hurt crossing the street or blanking out mid-flip.

Anyhow, tossing it out there. Be great to hear from others. I've got another kid with Type 1 Diabetes and the thread here was a great resource for me when he was diagnosed.

Thanks,
GM

 

[hagmania]

Oof, that has to be real anxiety-inducing for you as a parent.

Do the episodes occur during the middle of high activity? Perhaps being active is a safe time.

 

[Joe Bryant]

I'm sorry I don't know anything about this GB. But and for you and your son.

 

[General Malaise]

Oof, that has to be real anxiety-inducing for you as a parent.

Do the episodes occur during the middle of high activity? Perhaps being active is a safe time.

That's a really good question and thankfully my wife is keeping a journal and writing things down. She's noticed that he'll get space-outs during warm-ups before games or during practice, but during the actual games, dude is locked in. She's attempting to find some sort of pattern, but I'm not sure if that's how this works or if their just a random occurrence. The meds have seemed to slow the seizures down in frequency, but they're not gone. The docs said kids usually grow out of these around 14 or so, but not always. He's getting some more blood work done soon to run some more tests. He's handling it like a champ.

 

[General Malaise]

I'm sorry I don't know anything about this GB. But and for you and your son.

Thanks GB, I appreciate it.

 

[hagmania]

Oof, that has to be real anxiety-inducing for you as a parent.

Do the episodes occur during the middle of high activity? Perhaps being active is a safe time.

That's a really good question and thankfully my wife is keeping a journal and writing things down. She's noticed that he'll get space-outs during warm-ups before games or during practice, but during the actual games, dude is locked in. She's attempting to find some sort of pattern, but I'm not sure if that's how this works or if their just a random occurrence. The meds have seen to slow the seizures down in frequency, but they're not gone. The docs said kids usually grow out of these around 14 or so, but not always. He's getting some more blood work done soon to run some more tests. He's handling it like a champ.

Best of luck to you guys. I just went through an "idiopathic" medical diagnosis where the docs couldn't find any root cause. It wigged me out to no end and that was something far less on the emergent scale than "blanking out for 30 seconds." I hope you all get some answers.

 

[Gally]

Do the episodes occur during the middle of high activity? Perhaps being active is a safe time.

This was going to be my question as well. My guess (with no medical background at all) is that when he is focused on something it keeps the tune out from happening. It seems like it would be more likely to happen when he is not engaged and it lets his brain stall. This makes sense to me but again I really don't know what I am talking about.

 

[SWC]

gm i wish you and your son the absolute best i hope the meds work and i hope that he grows out of it but if he doesnt it sounds to me like he has a hell of a great family to take care of him

 

[General Malaise]

Do the episodes occur during the middle of high activity? Perhaps being active is a safe time.

This was going to be my question as well. My guess (with no medical background at all) is that when he is focused on something it keeps the tune out from happening. It seems like it would be more likely to happen when he is not engaged and it lets his brain stall. This makes sense to me but again I really don't know what I am talking about.

I think that's a good guess and food to chew on before his next apt. Thanks!

 

[General Malaise]

Oof, that has to be real anxiety-inducing for you as a parent.

Do the episodes occur during the middle of high activity? Perhaps being active is a safe time.

That's a really good question and thankfully my wife is keeping a journal and writing things down. She's noticed that he'll get space-outs during warm-ups before games or during practice, but during the actual games, dude is locked in. She's attempting to find some sort of pattern, but I'm not sure if that's how this works or if their just a random occurrence. The meds have seen to slow the seizures down in frequency, but they're not gone. The docs said kids usually grow out of these around 14 or so, but not always. He's getting some more blood work done soon to run some more tests. He's handling it like a champ.

Best of luck to you guys. I just went through an "idiopathic" medical diagnosis where the docs couldn't find any root cause. It wigged me out to no end and that was something far less on the emergent scale than "blanking out for 30 seconds." I hope you all get some answers.

Thanks GB. Hope things are getting better for you.

 

[hagmania]

Oof, that has to be real anxiety-inducing for you as a parent.

Do the episodes occur during the middle of high activity? Perhaps being active is a safe time.

That's a really good question and thankfully my wife is keeping a journal and writing things down. She's noticed that he'll get space-outs during warm-ups before games or during practice, but during the actual games, dude is locked in. She's attempting to find some sort of pattern, but I'm not sure if that's how this works or if their just a random occurrence. The meds have seen to slow the seizures down in frequency, but they're not gone. The docs said kids usually grow out of these around 14 or so, but not always. He's getting some more blood work done soon to run some more tests. He's handling it like a champ.

Best of luck to you guys. I just went through an "idiopathic" medical diagnosis where the docs couldn't find any root cause. It wigged me out to no end and that was something far less on the emergent scale than "blanking out for 30 seconds." I hope you all get some answers.

Thanks GB. Hope things are getting better for you.

Both wheels (mostly) good to go now, thanks!

 

[belljr]

@General Malaise does he pass out with no seizure or just basically space out?

I legitimately ask because while unlikely I feel this is something that happens to me.

AS an example, let's say I'm brushing my teeth. My wife will come in and say something like are you ok? ANd I'll kind of snap back into it but I was literally just standing there doing nothing but staring for 20-30 seconds but not realizing it.....

 

[General Malaise]

@General Malaise does he pass out with no seizure or just basically space out?

I legitimately ask because while unlikely I feel this is something that happens to me.

AS an example, let's say I'm brushing my teeth. My wife will come in and say something like are you ok? ANd I'll kind of snap back into it but I was literally just standing there doing nothing but staring for 20-30 seconds but not realizing it.....

Yup, this is what tends to happen. It's like his mind just blanks for half a minute or so and then he snaps back. He doesn't fall or close his eyes, his soul or spirit or what have you just vanishes and then comes right back. I'm hearing from other folks our age who have dealt with this too, so it's not as uncommon as I would have thought.

 

[DA RAIDERS]

I got nothing. Much love to the little guy!

 

[belljr]

@General Malaise does he pass out with no seizure or just basically space out?

I legitimately ask because while unlikely I feel this is something that happens to me.

AS an example, let's say I'm brushing my teeth. My wife will come in and say something like are you ok? ANd I'll kind of snap back into it but I was literally just standing there doing nothing but staring for 20-30 seconds but not realizing it.....

Yup, this is what tends to happen. It's like his mind just blanks for half a minute or so and then he snaps back. He doesn't fall or close his eyes, his soul or spirit or what have you just vanishes and then comes right back. I'm hearing from other folks our age who have dealt with this too, so it's not as uncommon as I would have thought.

I haven't noticed this too much recently but definitely noticed it with my daughter and was like oh she does the same thing I do thinking it was inadvertent day dreaming or something , very interesting....

GL

 

[General Malaise]

@General Malaise does he pass out with no seizure or just basically space out?

I legitimately ask because while unlikely I feel this is something that happens to me.

AS an example, let's say I'm brushing my teeth. My wife will come in and say something like are you ok? ANd I'll kind of snap back into it but I was literally just standing there doing nothing but staring for 20-30 seconds but not realizing it.....

Yup, this is what tends to happen. It's like his mind just blanks for half a minute or so and then he snaps back. He doesn't fall or close his eyes, his soul or spirit or what have you just vanishes and then comes right back. I'm hearing from other folks our age who have dealt with this too, so it's not as uncommon as I would have thought.

I haven't noticed this too much recently but definitely noticed it with my daughter and was like oh she does the same thing I do thinking it was inadvertent day dreaming or something , very interesting....

GL

Yup, that's EXACTLY what I thought was going on - thank goodness I'm not in charge! I just thought it was Leo being Leo, just a whimsical kid who lives in his own little world. No....no, he's got Absence Epilepsy and I probably would have made a great doctor in the 1400s. "Ahhh, you have a cough, do you - let's get some leaches and bromine!".

 

[gianmarco]

His neurologist should be able to answer all these questions for you.

I'm guessing they probably put him on ethosuximide as that's usually the first line medication. The good news is that absense seizures are usually pretty responsive to antiseizure medications. His neurologist will certainly be comfortable managing this as it's not that uncommon of a condition.

Best of luck to him, I know it's stressful and not anything you want to have to learn about, but it should be able to be managed and not affect lifestyle much, if at all.

 

[Gally]

his eyes, his soul or spirit or what have you just vanishes and then comes right back.

Sounds like this would rank high in the horror movie countown thread......

 

[General Malaise]

His neurologist should be able to answer all these questions for you.

I'm guessing they probably put him on ethosuximide as that's usually the first line medication. The good news is that absense seizures are usually pretty responsive to antiseizure medications. His neurologist will certainly be comfortable managing this as it's not that uncommon of a condition.

Best of luck to him, I know it's stressful and not anything you want to have to learn about, but it should be able to be managed and not affect lifestyle much, if at all.

Thank you so much, Gianmarco and yes, that is precisely what he is taking. Twice a day, dosage has increased since he started and I think it's helped reduce the frequency, but we're also a little worried that he might not know every time he has one and we're not getting a true count. Which is fine, I'm not as worried about it as my wife is because as you stated, he's been such a trooper and he's dominating sports, doing great in the classroom, his teacher just raves about him and I got a chance to coach him in soccer this spring - he's like the team captain lifting all the other guys up around him, going 100MPH all over the pitch. Then on Sunday during his flag football game, he scored 3 touchdowns, 2 INTs (one a pick-six) and threw two gorgeous passes that were on the money, so he's not been slowed down by the seizures nor the meds.

But he will fall asleep on the couch now watching sports with me, which is new. I just chalk it up to the meds and him playing so hard on the weekends.

 

[Gally]

I got a chance to coach him in soccer this spring - he's like the team captain lifting all the other guys up around him, going 100MPH all over the pitch. On Sunday, he score 3 touchdowns, 2 INTs (one a pick-six) and threw two gorgeous passes that were on the money,

Me thinks you had a moment of soul leaving and are mixing up the "football"

 

[General Malaise]

I got a chance to coach him in soccer this spring - he's like the team captain lifting all the other guys up around him, going 100MPH all over the pitch. On Sunday, he score 3 touchdowns, 2 INTs (one a pick-six) and threw two gorgeous passes that were on the money,

Me thinks you had a moment of soul leaving and are mixing up the "football"

Yeah, I should edit that. He played soccer on Saturday then flag football on Sunday. My transitions need work.

 

[Terminalxylem]

His neurologist should be able to answer all these questions for you.

I'm guessing they probably put him on ethosuximide as that's usually the first line medication. The good news is that absense seizures are usually pretty responsive to antiseizure medications. His neurologist will certainly be comfortable managing this as it's not that uncommon of a condition.

Best of luck to him, I know it's stressful and not anything you want to have to learn about, but it should be able to be managed and not affect lifestyle much, if at all.

Yeah, the other thing to know is kids usually grow out of it. Although many neuropsychiatric illnesses can be associated with absence seizures, sounds like GM’s kid is doing well otherwise.

In addition to taking the ethoxsuximide, he should keep up the regular exercise (though some stuff, like swimming, should be avoided) and optimize sleep hygiene, as general measures to minimize seizure frequency.

 

[General Malaise]

His neurologist should be able to answer all these questions for you.

I'm guessing they probably put him on ethosuximide as that's usually the first line medication. The good news is that absense seizures are usually pretty responsive to antiseizure medications. His neurologist will certainly be comfortable managing this as it's not that uncommon of a condition.

Best of luck to him, I know it's stressful and not anything you want to have to learn about, but it should be able to be managed and not affect lifestyle much, if at all.

Yeah, the other thing to know is kids usually grow out of it. Although many neuropsychiatric illnesses can be associated with absence seizures, sounds like GM’s kid is doing well otherwise.

In addition to taking the ethoxsuximide, he should keep up the regular exercise (though some stuff, like swimming, should be avoided) and optimize sleep hygiene, as general measures to minimize seizure frequency.

Thank you for chiming in, my friend. Much appreciated.

 

[wlwiles]

@General Malaise does he pass out with no seizure or just basically space out?

I legitimately ask because while unlikely I feel this is something that happens to me.

AS an example, let's say I'm brushing my teeth. My wife will come in and say something like are you ok? ANd I'll kind of snap back into it but I was literally just standing there doing nothing but staring for 20-30 seconds but not realizing it.....

Yup, this is what tends to happen. It's like his mind just blanks for half a minute or so and then he snaps back. He doesn't fall or close his eyes, his soul or spirit or what have you just vanishes and then comes right back. I'm hearing from other folks our age who have dealt with this too, so it's not as uncommon as I would have thought.

Does it involve him just blank staring at one particular thing/spot or just off in the distance, as if he's kind of "frozen in place"? I'm with @belljr - genuinely curious if this is something that I had as a kid. I'd be sitting in class and the teacher would call on me and I'd kind of snap back to reality and realize I'd just been staring at the wall with absolutely no recollection of what had just happened or what she had said before she said my name. Doesn't really ever happen anymore, but I remember it a lot as a kid...

 

[General Malaise]

@General Malaise does he pass out with no seizure or just basically space out?

I legitimately ask because while unlikely I feel this is something that happens to me.

AS an example, let's say I'm brushing my teeth. My wife will come in and say something like are you ok? ANd I'll kind of snap back into it but I was literally just standing there doing nothing but staring for 20-30 seconds but not realizing it.....

Yup, this is what tends to happen. It's like his mind just blanks for half a minute or so and then he snaps back. He doesn't fall or close his eyes, his soul or spirit or what have you just vanishes and then comes right back. I'm hearing from other folks our age who have dealt with this too, so it's not as uncommon as I would have thought.

Does it involve him just blank staring at one particular thing/spot or just off in the distance, as if he's kind of "frozen in place"? I'm with @belljr - genuinely curious if this is something that I had as a kid. I'd be sitting in class and the teacher would call on me and I'd kind of snap back to reality and realize I'd just been staring at the wall with absolutely no recollection of what had just happened or what she had said before she said my name. Doesn't really ever happen anymore, but I remember it a lot as a kid...

More the latter than the former. Again, I just assumed it was part of his quirky nature (which, also again, thank god for my wife) and tossed it up to him just being a goofball.

We let his teacher know early on and that guy has been an absolute angel helping him out, reporting back to us, etc. I wrote him a thank you note for conferences from one dad to another just thanking him so much for 'being there' for him. He noticed the space outs before we got him into the doctor and let my wife know about it after she asked him if he noticed anything unusual. Good dude, this teacher. Wish he made 10x what he does.

 

[The Dreaded Marco]

Hi Friends -

One of my 8 year old twins was recently diagnosed with Absence Epilepsy. Essentially, he will space out for 30 seconds or so and just kind of go.....blank, for lack of better terminology. These can happen a handful of times per day. He is on medication and has been for a month or so, is seeing a neurologist and we're trying to get up to speed on this one as it came out of nowhere for us. Just figured I'd ask the sagacious folks of FBG for any thoughts or experiences or even schtick.

My boy is a champ, taking everything in stride. He is VERY active, so his mom gets pretty worried when he does flips on the trampoline, plays hockey in the street with roller blades or gets on a bike. I worry too, but I don't want to put him in bubble wrap just yet as I think his active life is a feature and I love that about him. But I also don't want him to get hurt crossing the street or blanking out mid-flip.

Anyhow, tossing it out there. Be great to hear from others. I've got another kid with Type 1 Diabetes and the thread here was a great resource for me when he was diagnosed.

Thanks,
GM

I have several patients in my practice with childhood absence epilepsy---it's relatively common.

Most achieve good-to-great seizure control on ethosuximide and a majority are seizure-free by the time they reach adolescence.

Regarding the question about exercise/exertion as a trigger or preventative factor, I do know that hyperventilation is often used to trigger an absence spell when kids are being evaluated by pediatricians or their neurologist. It doesn't sound like your son is particularly triggered by that if he is still so active in sports, but definitely something to ask his neurologist at his next visit.

Good luck to your son.......

 

[beer 30]

But he will fall asleep on the couch now watching sports with me, which is new. I just chalk it up to the meds and him playing so hard on the weekends.

Hey GB, my youngest developed (and all you doctor types don't get on me, I don't know how epilepsy works) epilepsy manifested via seizures her sophomore year in college. She found out the hard way by having a seizure in her apartment. Luckily roommates where there to help but getting a call like that was tough. Scared the living **** out of us but she got into a neurologist, got on some meds and has been pretty seizure since (3 years now). He said if the medication worked then she would be 1. on it for the rest of her life but 2. probably wouldn't need to do anything else unless they started to get worse or more frequent. He didn't anticipate that given what he knew of her history so we are praying this is the solution. Reason I quoted that was the side effect is she sleeps all the time. It doesn't inhibit her from living her life but she sleeps a ton and naps when possible. A fair trade off given the alternative.

Good luck GM, it's a scary scenario thinking about your child blanking out when in the midst of doing some activity. My daughter was absolutely terrified of driving after. She had to get cleared by the neurologist because it was mandatory she go 6 months without a seizure on the medication before he would let her drive again. She's gotten over her fear and is a very self sufficient person but it was tough having some of those conversations. She wasn't afraid for herself but if she had an accident with someone else. She lives in city and the drivers are subpar to begin with.

 

[General Malaise]

Hi Friends -

One of my 8 year old twins was recently diagnosed with Absence Epilepsy. Essentially, he will space out for 30 seconds or so and just kind of go.....blank, for lack of better terminology. These can happen a handful of times per day. He is on medication and has been for a month or so, is seeing a neurologist and we're trying to get up to speed on this one as it came out of nowhere for us. Just figured I'd ask the sagacious folks of FBG for any thoughts or experiences or even schtick.

My boy is a champ, taking everything in stride. He is VERY active, so his mom gets pretty worried when he does flips on the trampoline, plays hockey in the street with roller blades or gets on a bike. I worry too, but I don't want to put him in bubble wrap just yet as I think his active life is a feature and I love that about him. But I also don't want him to get hurt crossing the street or blanking out mid-flip.

Anyhow, tossing it out there. Be great to hear from others. I've got another kid with Type 1 Diabetes and the thread here was a great resource for me when he was diagnosed.

Thanks,
GM

I have several patients in my practice with childhood absence epilepsy---it's relatively common.

Most achieve good-to-great seizure control on ethosuximide and a majority are seizure-free by the time they reach adolescence.

Regarding the question about exercise/exertion as a trigger or preventative factor, I do know that hyperventilation is often used to trigger an absence spell when kids are being evaluated by pediatricians or their neurologist. It doesn't sound like your son is particularly triggered by that if he is still so active in sports, but definitely something to ask his neurologist at his next visit.

Good luck to your son.......

Thank you friend. I really appreciate the feedback from you and others in here. Very comforting.

 

[General Malaise]

But he will fall asleep on the couch now watching sports with me, which is new. I just chalk it up to the meds and him playing so hard on the weekends.

Hey GB, my youngest developed (and all you doctor types don't get on me, I don't know how epilepsy works) epilepsy manifested via seizures her sophomore year in college. She found out the hard way by having a seizure in her apartment. Luckily roommates where there to help but getting a call like that was tough. Scared the living **** out of us but she got into a neurologist, got on some meds and has been pretty seizure since (3 years now). He said if the medication worked then she would be 1. on it for the rest of her life but 2. probably wouldn't need to do anything else unless they started to get worse or more frequent. He didn't anticipate that given what he knew of her history so we are praying this is the solution. Reason I quoted that was the side effect is she sleeps all the time. It doesn't inhibit her from living her life but she sleeps a ton and naps when possible. A fair trade off given the alternative.

Good luck GM, it's a scary scenario thinking about your child blanking out when in the midst of doing some activity. My daughter was absolutely terrified of driving after. She had to get cleared by the neurologist because it was mandatory she go 6 months without a seizure on the medication before he would let her drive again. She's gotten over her fear and is a very self sufficient person but it was tough having some of those conversations. She wasn't afraid for herself but if she had an accident with someone else. She lives in city and the drivers are subpar to begin with.

Much appreciated, brother. Glad your daughter is doing better and finding things that work for her. I always enjoy reading your posts about your gals - can feel the love and pride jumping off the screen.

 

[mr. furley]

Hi Friends -

One of my 8 year old twins was recently diagnosed with Absence Epilepsy. Essentially, he will space out for 30 seconds or so and just kind of go.....blank, for lack of better terminology. These can happen a handful of times per day. He is on medication and has been for a month or so, is seeing a neurologist and we're trying to get up to speed on this one as it came out of nowhere for us. Just figured I'd ask the sagacious folks of FBG for any thoughts or experiences or even schtick.

My boy is a champ, taking everything in stride. He is VERY active, so his mom gets pretty worried when he does flips on the trampoline, plays hockey in the street with roller blades or gets on a bike. I worry too, but I don't want to put him in bubble wrap just yet as I think his active life is a feature and I love that about him. But I also don't want him to get hurt crossing the street or blanking out mid-flip.

Anyhow, tossing it out there. Be great to hear from others. I've got another kid with Type 1 Diabetes and the thread here was a great resource for me when he was diagnosed.

Thanks,
GM

my sister has this condition. i don't know a ton about it, unfortunately. been a long, long time since this first cropped up. i do remember that my parents eventually got through to a neurologist who thankfully didn't find any anomalies or tumors. she is also on a panoply of medications for a number of reasons so doctors had kind of just chalked this up as low on the priority list.

she has managed OK with these sporadic episodes over the years. as i recall they strike most often when she's fatigued and/or her nervous system is just overwhelmed. she can just sorta.. check out.

she has fallen a time or two. thankfully not with any disastrous outcomes but typically it has happened at home (that i know of) and she eventually comes around with no real idea that she was gone. it's spooky and concerning but so far nothing horrible has happened for whatever that's worth.

 

[Corporation]

Hey GB, praying for you and yours. I had not heard of absence epilepsy but I remembered a friend of mine in high school who would, without warning and silently, have a similar episode. He would just blankly stare ahead for probably 20 - 30 seconds. For whatever reason, I was about the only one who could see when this was happening, and would alert a teacher (and they would contact his mother, who worked at the school). He had no ill effects from it, although he would say he felt kind of tired after the event. I didn't notice it multiple times per day, but it happened pretty frequently. His mom said they were petit mal seizures. I just looked it up and that appears to be the old term and it is what you were referring to. I haven't kept up with him, but I did hear from another guy after we were out of college for a few years that he pretty much "grew out of them". Of course he was on medication in high school so perhaps they were just under control.

I hope you guys are able to manage through it and it doesn't have a major impact on his activities, although I definitely understand Mom's concern here.

 

[snellman]

Praying for your family. I had started having seizures when I was 14. My parents still talk about them to this day. My 1st one happened at the dinner table when I was reading the bible during devotions. I was reading the passage about speaking in tongues when my parents said I just started babbling. They thought I was making fun of the passage in the bible. My 2st one was while I was driving, my dad was sitting in the front seat with me (in Iowa you can get a permit at 14 and drive with a parent in the front seat). He said I just slowed way down with a blank stare and started speaking jibberish. In my case they eventually found a cyst in the left temporal lobe that was causing the seizures. I would never feel them coming on and my parents said I would just have a blank stare and if I was speaking, I would just babble. After the surgery, I was on meds for 3 years after and eventually weaned off. I never had any issues until I was 30 when I started having Gran Mal seizures. It was determined that it was scar tissue that was causing them and if the technology and medical advances been there when I was 14, it would have been taken care of at that time.

I know it is not much help, but I just wanted to give you a little background. It sounds like you are doing all the right things with seeing a neurologist and your wife keeping track of the seizures to see if there is a pattern. Good luck.

 

[Zow]

I believe this is also referred to as petit mal seizures. If so, I know some kids and IIRC one adult with this condition growing up. While I wasn't super close to them, they all seemed to lead completely normal lives. I'd say the only awkwardness was when a petit mal seizure would occur around somebody who didn't know the person experiencing it had the condition - which led to some awkwardness and the need for explanations.