Our school thinks DS8 is having absence seizures. He zones out for a few seconds, then resumes his work.

I used to do exactly the same thing. I've googled, and learned that 70% of absence seizures are outgrown by the time the child is 18. This would fit.

HOWEVER... one of the criteria for it to be a seizure is that the individual is not responsive during the episode, and DS (as was the case with me) is always responsive.

I'm going to take him back to the doctor (yet again! sigh), but meanwhile my question to all of you is...

Is there anyone out there whose child has a EEG confirmed seizure disorder diagnosis with that child being reachable during seizures (i.e. is there such a thing as a "half seizure" ...or something similar).

Thanks

DD's possible absence seizures - which seemed at the time to last forever - actually were no more than a couple of seconds. She would then shake her head and rub her eyes. When we asked "Are you ok?" or the like she would respond with "Huh? What? Oh yeah, I'm ok." She never experienced one while hooked up to an EEG so they were never able to confirm if she was actually having seizures. They did pick up "discharge" during her in patient EEG, though.

We were asked if she responded to touch but we realized they never really lasted long enough to find out. I have a memory of her at about maybe 4 staring into space and not responding when I touched her cheek one time but I can't recall any other times when they lasted long enough to try it.

Consider yourself lucky that your school is coming up with the idea of absence seizures. My DD's kindergarten teacher just said she was looking away, not paying attention, being disrespectful and refusing to answer when spoken to. Combined with seeming to "go away" when reading you would think someone could have connected to dots to at least have us get her checked...

Good luck. If this is occurring 3 or more times a week they may want to do a 24 or 48 hour EEG to see what's going on. DD really didn't mind having them. She even wore them to school for a couple of days last June.

CCN, our dd11 has a seizure disorder (although she's been seizure-free for several years). We didn't realize that she'd had seizures until they progressed past absence seizures and she was having seizures that were more obvious (including auras before the seizure, convulsing, and falling asleep to the point of not being able to be woken up after). Even when she had those more complicated seizures, it took us awhile to realize they were actually seizures - the actual duration of a seizure, although it may seem like forever if you're with your child and aware that they are having a seizure, does not last long - it's over in the blink of an eye. Absence seizures and partial complex seizures are seizures in which a person doesn't lose consciousness, and their eyes don't close - they simply seem to stare or blank out for a short period of time. They also don't necessarily happen frequently enough to be really noticable - my dd had periods where she had "frequent" seizures (for her), but we never noticed more than one per day and usually never more than a few per month. Chances are we were missing more, but they weren't ever frequent enough to catch on a typical 45-minute EEG. She has a confirmed seizure disorder based on our description of symptoms to her neurologist - and that's it. Her seizures were random enough we felt there was a good possibility that if she had one of the 24 hour or longer EEGs that also might not catch them.

When she had an absence seizure - it was very *very* quick, over so quickly that it might seem she was responsive simply because she was responsive after it was over. The smaller partial complex seizures were more obvious because they caused her to fall asleep and she was very agitated when they were happening - but we didn't see that until after she'd had the larger seizures which resulted in convulsions - because that's what we understood seizures to be. We saw the other seizures once her neurologist had explained the different types and what to look for to us.

I'm actually very surprised a teacher would suggest your child has absence seizures, simply because most people aren't familiar with them or wouldn't think of that right away.. soooo.. that tends to make me think it is something worth checking into.

Best wishes,

polarbear

ps - I just thought of a few more things you could ask your ds' teachers about. Sometimes seizures have triggers - flashing lights are one example, can't think of any others right now, but the idea is that a specific type of trigger might be tied to seizures in an individual, so when you have a child with a history of seizures you try to ferret out what might trigger them. You could ask his teachers when the episodes happened that look like seizures, what he was doing or what was going on in the classroom etc when they happened. With seizures, if you kept a diary over time, you might see some common threads.

Another thing you can ask his teachers is what specifically does he look like during the zoning out - is he staring straight ahead, is he still, does he lick his lower lip (odd question... our neurologist asked that!), any kind of detail. Also ask how he behaves after - it sounds like he goes straight back into his work without anything appearing to have impacted him, but he ever appears to seem tired, or confused, etc, have them let you know.

And last thing - I would have them ask him if what he was thinking or if he noticed that he seemed to blank out for a second. Our dd, by the time she was 8 years old, could give us a good description of how she felt immediately before her seizures - and she was having auras (seeing lights and tingly feelings in her legs and arms) that we might not have known about if we hadn't asked.

Best wishes,

polarbear

Thanks... I appreciate the responses.

Pemberley - I'd love to get an EEG done, actually, just to be sure. I think DS would be compliant, although he has an extremely sensitive scalp, so I'm not sure how that would work out.

Polarbear - it's interesting that you mention auras - both DD and I have had them. May I ask how your daughter has been seizure free? Is it a medication that's working, or has she outgrown them? The episodes stopped for me in high school (I was never diagnosed with anything... no one ever noticed... I just used to periodically "zone out"). Apparently I outgrew it, whatever it was.

The school sent me a video of DS having an episode. He was working quite diligently at a frustrating task, and about 4 minutes in, gazed at the work of the student next to him for about 20 seconds, then returned to his work (and seemed exactly as he had been before). There were no obvious signs of any kind - he just looked lost in thought, and sort of blinked a couple of times. His face and body remained completely normal. It reminded me exactly of the way it used to happen for me.

I'm going to call the doctor on Monday and show her the video and see what she thinks.

It was sort of funny, though, because at one point in the video one of DS's classmates walked past his desk, paused and stared at something, lost in thought, and then carried on her way. How do you know the difference between a seizure and a child pausing to think for a moment? It can be so hard to know.

I suppose it's good that DS's ADHD has him "under a microscope" because his behaviours get noticed...

If he does have to have an EEG this could help. When DD was being wired for her inpatient test she asked to borrow my iPhone. I thought she was going to play a game on it and handed it over. Instead she turned on the camera, set it to video, reversed the camera and filmed the process so she could see what was going on behind her. As long as her head stayed still the tech was fine with her moving her arms as needed. She was so interested in filming and watching the process I don't think she even noticed any sensation on her scalp.

Both outpatient EEG's were pretty simple but trying to get the glue out of her hair and off her scalp following the inpatient was quite the chore. Different type of adhesive I guess since the wires had to stay in place for several days. This was where a sensitive scalp could be an issue...

That's awesome - thank you for that suggestion He'd probably like that. He's interested in science stuff (he's my "molecules questions" kid) so he'd probably think it's cool (electrodes reading his brain). My only challenge will be explaining why he's having it done and not his sister. (He doesn't know about his diagnoses... He knows he's seen lots of doctors, but I'm not sure if he realizes that most kids haven't done all the testing he has). He's funny... clever and innocent all rolled into one.

CCN, I'm curious-- why haven't you told him his diagnoses? This might be an opportunity to do that.

DeeDee

DeeDee - I don't want him to think he's any less capable than anyone else.

I was going to, actually... a few weeks ago. At the insistence of the school we took him back to another doctor - this one a provincially renowned psychiatrist who specializes in ASD. He said our DS doesn't show enough signs of ASD to warrant a full assessment, but definitely has ADHD. I thought, ok... enough doctors have agreed on the ADHD, so maybe I should tell him. I had a window of opportunity (just DS and I at home alone) but felt that I couldn't do something like that without DH's blessing (he was at work). I lost the window (DD came home, domestic chaos resumed, lol) and I've since lost my nerve.

I will tell him, but the moment has to be right...

IMHO the disability conversation can be like the conversation for an adopted child; you want to make it not a big reveal, but something he later feels he's always known about himself, like brown eyes. We thought we would wait until DS could handle the news; but at 8 he had already intuited that he was a terrible person for not behaving like other people, and so much damage was done by our not getting out in front of that. He is still coming to terms with his disability, but he knows a lot about it, and that's been useful for him in thinking about himself.

So: just a thought.
DeeDee

We just agonised over when/how to tell our 11yr old DD that she has Aspergers (only just diagnosed). When we did tell her (using the attributes method recommended by Tony Attwood) she interrupted to ask if she was ill, then if she was German (hello focusing on weird details) and then moved right along to "So can we go shopping now please?" and has not mentioned it since... She knows she has strengths and weaknesses other kids don't, she knows she seems to go see specialists more than other kids. She seems more interested in her dyslexia... It was a big deal to us, particularly DH, and really like nothing at all to her, that will change over time but ideally it will be as DeeDee said - just something she knows about herself, like her eye colour...

We explained it as being like left handedness - i.e. Nothing is wrong with DD - she just learns in a different way from the majority. DD doesn't even know who in her class is left handed but when DH and I were in school it was a big deal because those kids had to have special scissors and some teachers complained about having to alter assignments for the lefties. When her grandparents were in school it was considered a bad thing to be left handed and the poor left handed kids had to try to learn to do everything with their right hands. There was nothing wrong with them - they just did things differently. But people didn't understand it back then so those kids had a really hard time in school.

It's the same with the way DD (and DH and his father) learn. Her brain (as well as DH's and his father's) processes things differently so teachers have learned over the years how to make learning easier for kids like her (and DH and his father). We are so lucky to have spec ed teacher who knows how to help her. When DH was offered the help as a kid his parents said no - they didn't understand that school would have been so much better for him if he could have learned in the way that was right for him. Poor grandpa was treated like he was a bad kid because they just didn't understand back then that some people just learn differently...

She still doesn't want to be seen as different but at least it has been framed in terms of "different" rather than "wrong". Now if only we could get her classroom teacher to understand this little lesson...

It's interesting, because DS doesn't seem to be too bothered by who he is, which could be part of why I'm in no rush. I've thought of the fact that a diagnosis would explain to him why he thinks the way he does (ie racing brain), and I guess I'm waiting for it to be clear that he needs that info.

He seems quite secure. He matter of factly says to DH and I: "I'm smarter than both of you because I have a young brain." He likes to be silly because he thinks it's funny - if you ask him what the other kids think, he'll say "they don't think it's as funny as I do." ok... so how does he feel about that? "I don't care what they think. I like to be funny."

I think part of the reason is that he's in a class with other quirky kids, so he's not the only atypical one. Also, he has friends, and the school staff seem to really like him. Basically he doesn't really have any reason to feel badly about himself. He likes recess and PE, which are prime times for kids to be bullied, so that seems to check out ok. (I was bullied as a kid, so I'm hyper-vigilant to the possibility of him being bullied).

Self esteem is SO important, and he doesn't really present as having self-esteem issues. Both the school anxiety counselor and a private anxiety counselor at our psychologist's firm say that he doesn't seem to have any atypical or problematic anxiety issues. He's very happy go lucky.

I don't know. I think my feeling is that if I tell him he might start to feel down on himself. The upside is that there's no medical test for ADHD, so I can present it to him as just "the doctors' opinions... no one really knows for sure."

The AWESOME part is that he's SO much like me (I think I have it too), so we can relate to each other.

I think when the time is right, I'll be able to tell him, but the benefits will have to out weight the possible negative effects. He seems pretty content with himself at the moment.

Yes! This is the way to do it, I think. (I mean really, who's to say that ADHD/ASD/Dyslexia/etc is wrong and only typical is right? They're all right, just in different ways)

LOVE this book:

http://www.amazon.ca/gp/product/0738215244/ref=ox_sc_act_title_1?ie=UTF8&psc=1&smid=A3DWYIK6Y9EEQB

Update: our family doctor doesn't see a seizure in the video: she says that during absence seizures, the child is "gone" but in the video you can see DS8 thinking. (This is what I see too). She did recommend we ask the ped for a second opinion, so I'm going to do that next.

When we were trying to figure it out I googled Absence Seizures and found bunches of videos posted of kids having them. I must have looked at 100+ videos and found exactly 2 that looked familiar. One was a little girl dancing in a circle - she never stopped dancing just slowed down for a few beats and then went back to normal speed. The other was a little boy doing his homework who looked up and away for a second or 2. Neither was what I expected to see based on what I had read. You may want to try watching these videos to see if anything looks familiar to you.

Good luck!

I watched a bunch... none of them really fit. I have another question, though, re: seizures... can they develop suddenly? DS8 has been watched like a hawk since KG, and no one has said anything about this before.

CNN, I don't know for sure if seizures can develop suddenly (except that they can develop suddenly if there has been injury to the brain). I think that one thing that is possible though is that seizures may go unrecognized for a long time (even years) and it's also possible (per my dd's neurologist) for seizures to gradually become longer-lasting and more noticable due to changes in symptoms.

Of the people I know well who have seizure disorders, one didn't have seizures that she was aware of until she was an adult. The other had what everyone thought were fainting spells every few years as a child, until she fell once when she "fainted" and hit her head and had to go to the hospital to get it checked out - and the hospital staff realized she'd had a seizure. The third person I know well is my dd11, and as I mentioned before - she had seizures for several years before she had a seizure that was obvious enough for her parents to realize she was having a seizure.

DD also had a therapist several years ago who had her first seizure as an adult - it was a grand mal. And now that I think about it, ds13 had a friend when he was younger who had her first seizure when she was in kindergarten (during school). She went on to have fairly frequent seizures...

Soooo... that's my random and limited sphere or knowledge re seizures... but from that I'd guess it's possible that they either might start suddenly in a person with no history of seizures or they also might seem to start suddenly simply because the previous seizures were small enough to go undetected.

polarbear

Polarbear - thank you. That all makes sense.

It occurred to me this morning that maybe it has been ongoing, but the school has been seeing it as autism rather than seizures, so they've never said the word "seizure" before.

They may not know about the overlap between seizure disorders and ASD so they may have never thought to call it seizures. Once our autism doc weighed in and said that DS doesn't seem to meet the criteria for ASD, the school then had to reframe DS's zoning out behaviour: "well if it's not autism, maybe it's seizures instead" ...meanwhile the behaviour may have been going on for years at school.

Sometimes the schools are harder to figure out than the kids, lol. (sigh)

(And who knows... maybe DS8 actually has both...)

Last year the folks at school kept telling us they weren't seeing anything out of the ordinary with DD. In an IEP meeting late in the school year we were asked once again to describe what we were referring to and I demonstrated DD zoning out. 2 days later there was an incident where a teacher (not her regular classroom teacher) scolded DD for "not paying attention" and "looking away". DD got very upset because she had no idea what she was doing wrong - as far as she knew she was "just doing my work.". They were unable to calm her down and removed her from the classroom. Wouldn't you know the speech pathologist trying to calm her saw *exactly* what I had demonstrated just a couple of days earlier. I mean *exactly*. It was the only time anyone in the school reported seeing this. Afterwards the spec ed teacher and SW asked me to demonstrate for them again. They both indicated that this was very different from a previous student with absence seizures and they realized they had been looking for the wrong thing. The spec ed teacher thought it was likely that she had in fact seen this behavior from DD before but did not understand what she was looking for. This is an excellent, experienced spec ed teacher with almost 40 years of teaching experience.

As the saying goes when you believe it you'll see it...

Awww... the poor little thing. I'm sorry that happened to her. (Here I am wishing the school staff would be stricter with DS8, and then I hear a story like yours). Perspective sure does help.

It happened again this morning in line up... one of the known bullies in grade 4 came over to DS's line up and started talking to him and a couple of his classmates in line. This boy was dominant, leaning forward and poking one of the kids (not DS). He didn't stay long enough for a situation to develop that would have required adult intervention.

Right after he left, DS zoned out (this happened right when the line up started walking into the school... DS followed along, while still zoned out). I seemed like DS had been over stimulated by the interaction and zoned out as a result of it. (He has an atypical sensory profile, which is one of the reasons the school thinks ASD, even though sensory differences are not diagnostic criteria). That particular episode seemed to be sensory related.

I just wish I could be a fly on the wall in the class all day, so I could watch him and see for myself.

DD9 has been said to "lock up" by her 2nd and 3rd grade teachers. The 3rd grade teacher, who was very experienced, said it might be those absence seizures. Eventually as DD improved, this teacher thought maybe it was just DD adjusting to the shock of actually being challenged in school for the first time.

DD does hyperfocus and requires her named to be called more than once before she will be drawn out of a book, for instance. Her 4th grade teacher said there are about 8 students in the class that are the same way.

Reports of this issue have died down so it is off the radar for now.

Hmm. Hyper focus has occurred to me as well. In fact, a friend with an ADHD child immediately said "oh that's not a seizure, that's just hyper focus - it's an ADHD thing."

I'm still waiting to hear back from the ped's office about showing her the vid and maybe getting a neurologist referral - meanwhile I want to get a referral to our children's hospital ADHD clinic, which I've heard is top notch.

And on it goes...