newbie, daughter w/visual reflex seizures

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:soap: Thought I'd say hello. My daughter is 16, has had complex partial seizures for years. We don't know exactly when they started because we didn't know they were happening! (She now thinks it when she was 8, now that she can put words to odd experiences she was having.) She had a couple of psychiatric diagnoses and a learning disability and some medical issues. And she was addicted--I mean truly addicted--to video games. She was in terrible shape. But nobody saw her experience a seizure until we'd already figured out, with the help of one dr., that she was having these events during video games, TV, and then, after she gave up video games, while reading.

Without video games she began to function so much better in every respect: mood, focus, executive function, the medical stuff. I think this could also be true for a lot of kids who don't know they're experiencing subtle events, and their parents don't know it, either, because there's usually nothing you can see. Watching TV is still a problem as is reading, but we're using special glasses and taking breaks.

EEGs were a frustrating waste of time because the abnormalities didn't have classic epileptiform patterns. Without the exact spike-wave thing, neurologists were extremely skeptical. They hastily attributed the abnormalities to her psychiatric diagnoses, her meds, alleged drowsiness, etc. We provided a ton of clinical evidence but they were more influenced by the EEG. Hey, aren't you supposed to treat the patient, not the EEG? What is it with these guys?! We finally found a compassionate and open-minded neurologist who looked more closely at the EEG abnormalities and saw they couldn't be explained away so quickly. He ordered at PET scan, which showed dysfunction in both temporal lobes. So he's great, and he's treating my daughter, but it is still difficult for him to utter the word seizure or put it in writing, which would be very helpful for her school, because drs are so reluctant to make this diagnosis without total proof. Surface electrodes just don't do a good enough job in all cases. It seems like pretty crude technology, actually. Also, the neurologists were not knowledgeable about video games causing anything other than generalized seizures.

She's got Z1 glasses that were helpful at first but then less so. We're ending a trial of Depakote--it put her in a fog and gave her terrible stomach aches. We like Lamictal and are going to fool around with that again and see if that plus the glasses will work. She's made huge progress overall but it's been such a battle--overcoming the game addiction, getting neurologists to take us seriously, getting her school to understand that she needed to be away from computer screens at school and that her many absences due to extreme fatigue had nothing to do with her motivation to attend.

She is socially very isolated and can you imagine a 16 year old who is not allowed to use a computer? The restrictions on her activity are a big drag. The good news is that one of the psychiatric diagnoses no longer seems to fit. She was in a constant post-ictal state for years, having multiple events per day in front of video games. She's not supremely irritable and demanding anymore. She is very dependent, though.

Well, I guess that's enough for an intro! Nice to be in the company of people who understand what an effect this has on absolutely everything in the family's life.
Hi welcome to the group.

my daughter has a seizure disorder as well. Her's, as my signature says, is due to her brain abnormality. My daughter never really had probs with visual stim until the last two movies we took the family to. She had a complex partial 2/3's of the way through both movies. Odd that in 8yrs at the movies it never happened until just in the last two months. Of course I know seizures change. And she is the queen of changing her activity. ha.

But welcome aboard. This is a nice group.
Since I have started having seizures, I have only been to movie theater twice and both times I had seizure. I thought it was weird as I never saw anyone post about it. Interesting to hear your daughter as same problem sixpack
First off, Hi and Welcome! :hello:

I also have problems with videos, movies, big screen TVs, reading, light, patterns...well, most things visual. One of the places in my brain that my seizures spark is in my occipital lobe (vision).

I was diagnosed at age 16, but like your daughter, I was able to remember back to "strange events" throughout my childhood. I now know that they were auras/simple-partial seizures.

I also have some forms of reflex seizures (i.e. startle, hot water, etc.).

Anyway, I wanted to chime in and let you know that you are not alone and that we're glad you found our site! :agree:

All the best. -Julie
Hi adddxat :hello: Welcome to CWE!!!

It can be frustrating trying to find a doctor who's compassionate and willing to listen to you and treat the patient. I was so grateful when we found my son's new doctor a couple months ago. Working closely with a physician who listens and you can trust is a HUGE plus.

It's great to have you here. Pull up a chair and make yourself at home :)
I also have problems with videos, movies, big screen TVs, reading, light, patterns...well, most things visual. One of the places in my brain that my seizures spark is in my occipital lobe (vision).

occipital lobe---at Lindsay's last EEG in October, it showed seizure activity in her occipital lobe. That's a change from the EEG in 3/07. So I guess that's why the movies are bothering her.:ponder:
My aura are all vision related. I tell people the best way to describe it, my aura looks like a dream sequence on get all wavy and distorted.
I don't know why I didn't make the connection to the big screen and my seizures. There has been so many movies lately I want to go see but figured I would just wait and see them on they come out on DVD. The last movie I went to see was the Batman movie and I missed the ending!
Hi adddd! Welcome to CWE. :) I'm so glad that your daughter is getting better. Persistence is key. :) Your daughter is lucky that you noticed the connection between the games and the seizures. Since she's photosensitive, you need to be careful about what kind of lightbulbs you use in your house. Those new energy efficient ones that look like corkscrews can trigger seizures. As can the lighting in public places.
Thanks for the welcome. Today's high-tech environment is a real problem! I didn't know about those new lightbulbs. Fluorescent lights don't bother her.

We didn't notice the connection between the games and the seizures until a doctor we know (who doesn't treat kids) who'd been hearing a lot about her struggles suggested maybe she was having seizures. Then I started reading about video games and seizures and it all clicked, and it all made sense instantly with other aspects of her history. OK, here goes, I'm going to spill it out--for 2 years before we knew why it was happening, she would sit for hours playing video games and she would be in a terrible mood, very out of it, and, worst of all, she had episodes of incontinence every day in front of the computer that she was not aware of. We used to get mad at her for all this and couldn't figure out how she couldn't know about it. We couldn't have anyone over to our house because the it was really gross around here. Eventually I became aware that if she hadn't had an incontinence problem, we might never have known she was having episodes, and she could have continued indefinitely having terrible impairment to her mood, concentration, impulse control, arousal level, and so much else. She felt awful about it but she was compulsively drawn to the screen--this is characteristic of photosensitivity. I would come into the room and be aware instantly that she had had another accident but she was so dazed that she would just deny it. It was horrible and really frightening that she could be so "out of it." Then when we understood what was happening, it took until a seizure generalized and we ended up in the ER that we met neurologist #7 who listened to me, told me the history I provided him was very helpful, said she deserved a full seizure workup, etc. In 2 years I had taken her to 6 neurologists who just didn't get it and didn't seem to want to. It was easier for them to suggest this was all emotionally based.

So we have come a really long way. Her oppositionality and explosiveness went away when the seizures were greatly reduced. And we saw the sweet person who had been trapped for years inside a hypersensitive brain being bombarded by stimuli we didn't know were triggering her. I don't know how we got through it. We had taken her to a variety of specialists who were all puzzled. One psychiatrist suggested we send her to a residential program because her behavior (and endless laundry) seemed to be too much for me to deal with. Once we understood that it was seizures, the family could rally around her while together we took on the neurologists for another 2 years...and the school.
Hi, and thanks for the welcome. What do you do to prevent seizures when reading? We found it helpful to put music on in the background. It creates enough of a distraction that it keeps my daughter from getting totally sucked in to a susceptible state. It's at times of maximum visual concentration that she has these episodes.

I've read about other triggers like hot water, startle, and eating. I always think how terrible it would be to have food do that to you.
Hi adddxat48, welcome to the forum. :hello:

I've read about the Z1 glasses, but never met anyone (that I can remember) who had tried them first hand. They work pretty good then?
Hi adddxat48

As far as the psychological changes you saw in your daughter I can relate to.
My daughter lost her memory for three months, and I was told it was emotionally based. Never a connection was made to the meds, or the switch in meds. One neuro did say it most likely was seizure related. I have since met others that have had seizure related memory losses. There was additional odd behavior on the meds. Being a teenager the school thought she was doing it for attention.

I can only imagine the struggles you have been through. For me I thank goodness daily for the internet. I actually am thankful for the seizures. They were an indication that something was/is wrong with my daughters health. If we were not alerted as a teen, we might be facing far more crucial health issues in the future. I hope the nutrition and environmental changes that we are making today will benefit her in the quality of life she has in the future.

I suggest that you do some research on how nutrition plays a role in psychological, emotional, and neurological health.
Hi, Bernard,
Very nice site you've got here! The Z1 glasses--I don't understand it--started out strong but became less effective after only about 10 days. It's happened plenty of times before with drugs, that we think we've got this thing under control, only to see it begin unravelling again. The hope was that they'd work well enough that we wouldn't feel we had to move forward with a Depakote trial. The experts in visual reflex seizures say Depakote is the preferred med. Well, after 6 weeks (the last 3 in various states of misery), we're crossing Depakote off the list :(
Thanks for the welcome, sixpack. For my daughter movies are OK. There are a number of factors that contribute to the visual sensitivity. One is the size of the visual field, so a big picture is more likely to be a problem than a far-away, small TV screen. Movies, though, don't have the "refresh" thing that computer monitors and TVs do, that consists of very rapid fluctuation in the brightness of the image. It's so hard to figure out why sometimes things are a problem and sometimes they're not. It's hard to catalog everything about a child's life to look for clues!
Hi, Robin,
I appreciate the effort you made in blogging about Rebecca's neurofeedback. I haven't finished reading through it yet. But I sure could relate to the ups and downs, the feeling of being past a certain phase only to find out it's not that simple. I actually tried to get my daughter interested in NF last spring. The neuropsych who was evaluating her suggested it. I decided I would start in tandem with my daughter to help keep her motivated and also because I was curious. Well, after about 5 sessions, she started to back out at the last minute and eventually I got her to say that she'd decided she didn't want to continue. I had prepaid for her sessions so I went myself so the appointments wouldn't be a loss. Well, I kept it up for months because I found it extremely helpful for my mood and ADD! I would like to find another provider for her to give NF another try. I know that it is an effective therapy from my own experience. Of course, there's the $$$ and time commitment. I don't have the energy at the moment to try to fight the insurance company for coverage.
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