I have an 8 year old daughter who started rolling her eyes in the sunlight about 3 or 4 years ago. This summer she added a hand wave. It happens only in the sunlight and never while wearing swim goggles. We visited an eye doctor - and everything looked good. Then went to see a neurologist and he first thought it was a tic but did schedule a ambulatory EEG - after the results of the EEG - he said it was seizures and diagnosed her with reflexive seizure disorder. Our next appt. is this Thursday the 25th of October with the same Neurologist. He said during the last visit that he was 99% sure it was not seizures. Has anybody had similar experiences - can anyone help. I have done a lot of research and it does not appear to be sunflower syndrome. Her seizures only last 1-5 seconds and only occur in the sunlight. When she wears blue goggles (or welding goggles) she does not do it. She did hit her head when she was younger - could this be a cause - I read somewhere that it maybe a factor. Or what about mercury counts or yeast levels? Can anyone help with additional information? It is only sunlight - not strobe light or flashing light - and only outdoors. We have very little (distant) family history of seizures.
Reflexive seizures triggered by natural light
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jemsister
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So first he said it was a tic, then he said it was seizures, and then he said it's not seizures? I have no experience with photosensitive types of seizures, but if I remember right, there are different kinds of photosensitivity. It's not always flashing lights, sometimes it's patterns like stripes or things like that. I really don't know anything about it, I just know I have met people who have seizures triggered by patterns and that sort of thing. I knew one girl who had to have blackout curtains in her house because of bright lights being a trigger.
You certainly need to clarify what the neurologist said as a diagnosing epilepsy is clearly not the same as saying 99% sure it is not seizures!
I am apparently mildly photosensitive - I had one seizure induced by a strong visual pattern. Sunlight alone won't cause a photosensitive seizure unless it is flickering. This flickering can be caused by lots of things and can be very minor depending on how sensitive you are. Flickering can be caused by such things as the hand waving (I used to do this as a kid too and it used to make me feel very relaxed and spaced out - kind of like being drunk even! I used to like the feeling and so would induce it more and more, it just never progressed to a full seizure), driving passed trees or walking passed railings with the sunlight flickering through etc.
Even rapid blinking while looking at the sun can have an effect, especialy as eye closure can enhance the effects of flickering light due to the provocative red colour when eyes are closed. Is there the chance that your daughter was inducing flickering by blinking before she started hand waving? Blinking obviously less noticeable than hand waving.
Reflex seizures are generally easily managed when you have a specific trigger as the trigger can be avoided and if effective not even AEDS will be required.
Also if it is photosensitive epilepsy this is generally genetically determined and not as a result of a bump on the head.
I am apparently mildly photosensitive - I had one seizure induced by a strong visual pattern. Sunlight alone won't cause a photosensitive seizure unless it is flickering. This flickering can be caused by lots of things and can be very minor depending on how sensitive you are. Flickering can be caused by such things as the hand waving (I used to do this as a kid too and it used to make me feel very relaxed and spaced out - kind of like being drunk even! I used to like the feeling and so would induce it more and more, it just never progressed to a full seizure), driving passed trees or walking passed railings with the sunlight flickering through etc.
Even rapid blinking while looking at the sun can have an effect, especialy as eye closure can enhance the effects of flickering light due to the provocative red colour when eyes are closed. Is there the chance that your daughter was inducing flickering by blinking before she started hand waving? Blinking obviously less noticeable than hand waving.
Reflex seizures are generally easily managed when you have a specific trigger as the trigger can be avoided and if effective not even AEDS will be required.
Also if it is photosensitive epilepsy this is generally genetically determined and not as a result of a bump on the head.
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Thanks for the quick replies - below is some of the latest developments:
After we visited the doctor again - he said she has reflexive seizure disorder. He did not prescribe any medication - but we do have an MRI scheduled for this Friday (11/30/12). He believes the MRI will show nothing and that it is just being done to rule out other possible factors. She has progressively gotten worse as far as the amount of seizures go. We do not think it is self induced - she has them even when her hands are being used. She will roll her eyes and look toward the sun - lasts for about 3 to 8 seconds and most of the time she does not lose conscious. She can have upwards of 20 to 40 in an hour and it mostly always triggered by bright natural light - it does not matter if the light is flickering or constant. If we patch one eye (doesn't matter which eye) - then her seizures decrease by 80%. If she wear's blu-blockers and a hat - it also dramatically decreases - as with swim goggles. The doctor has been practicing for 25 years and he just keeps saying that it is very rare. Don't really have any answers - it is very frustrating. She has even recently done some during the night or early morning - mostly when she is tired (but not with hand wave). We have noticed maybe 5 to 10 times overall - whereas it is thousands in sunlight. If anyone has seen or heard of anyone else who has these same symptoms - my wife and I would love to talk to you. I have read so much on the internet, that my head is spinning.
After we visited the doctor again - he said she has reflexive seizure disorder. He did not prescribe any medication - but we do have an MRI scheduled for this Friday (11/30/12). He believes the MRI will show nothing and that it is just being done to rule out other possible factors. She has progressively gotten worse as far as the amount of seizures go. We do not think it is self induced - she has them even when her hands are being used. She will roll her eyes and look toward the sun - lasts for about 3 to 8 seconds and most of the time she does not lose conscious. She can have upwards of 20 to 40 in an hour and it mostly always triggered by bright natural light - it does not matter if the light is flickering or constant. If we patch one eye (doesn't matter which eye) - then her seizures decrease by 80%. If she wear's blu-blockers and a hat - it also dramatically decreases - as with swim goggles. The doctor has been practicing for 25 years and he just keeps saying that it is very rare. Don't really have any answers - it is very frustrating. She has even recently done some during the night or early morning - mostly when she is tired (but not with hand wave). We have noticed maybe 5 to 10 times overall - whereas it is thousands in sunlight. If anyone has seen or heard of anyone else who has these same symptoms - my wife and I would love to talk to you. I have read so much on the internet, that my head is spinning.
All I can suggest is maybe getting a second opinion from an epileptologist? Not because your current doctor is wrong but just he confesses to not knowing much about it. Also if she is having these episodes at night as well, obvioulsy away from sun, then the sun reflex can't be the only cause and so it might not be completely reflexive epilepsy?
Try not to rely on internet too much. It is too much unmoderated information. Use it to arm yourself with questions for the doctors but try not to diagnose or anything from it.
I'd go for a second opinion as if my daughter was having up to 40 seizures an hour and my doctor still felt there was no need for medication, I'd want to have this confirmed as the right approach as it seems odd.
Try not to rely on internet too much. It is too much unmoderated information. Use it to arm yourself with questions for the doctors but try not to diagnose or anything from it.
I'd go for a second opinion as if my daughter was having up to 40 seizures an hour and my doctor still felt there was no need for medication, I'd want to have this confirmed as the right approach as it seems odd.
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It's possible your daughter is experiencing Jeavons Syndrome (see http://en.wikipedia.org/wiki/Jeavons_syndrome) or something similar. I agree with Cardones -- it's worth getting a second or even third opinion in order to know how to proceed and whether medication is appropriate.