Reflexive Seizure Disorder

[Dsmith34]

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.

 

[diannapop]

Sunlight and Reflexive Seizure Disorder

Hi D - I am reading and replying to this from your post in my thread. Decided to reply here instead of there, since it appears my thread was hijacked by some dude quoting studies, and has gotten off-topic.
I had not heard of Reflexive Seizure Disorder so I Googled it, and it seems to be used to diagnose a non-epileptic seizure. My daughter definitely has epilepsy, because she also has periodic tonic clonic seizures in addition to the eye-fluttering and hand-waving that happens in the sunlight. Her neurologist still has not definitively diagnosed any link between the sunlight response and her tonic clonic episodes, since only four of the eight tonic clonic seizures she has had were when she was in the sun, and there were other factors involved in those episodes (medication changes, lack of sleep). It is possible that her epileptic seizures are one thing, and the sunlight response is a non-epileptic seizure. The medications my daughter takes only keep the tonic clonic and absence seizures at bay and have had little or no effect on the sunlight response.
So in your daughter's case, it is likely that the eye protection is the only treatment right now, unless she develops any other neurological issues. Does she wear them diligently? My daughter only recently has been wearing her eyewear consistently, and she just turned 18. She never wanted to appear "different", so she wouldn't wear her dark glasses and then end up having to explain her condition when the other students noticed the fluttering / waving...so I could never understand her reluctance to just wear the darn glasses :huh:

 

[Dsmith34]

Diannapop

Diannapop,

Thanks for responding - we just got her polarized blu-blockers - they actually arrived today - and from the limited experiment that we did after school today - it was positive. They are wrap around glasses - so I think that helps as well. My daughter has never had a seizure, other than the ones she has in the sunlight - in which she could have 50 in one day and they last on a short while. During her 24 hour amblatory EEG - it was only sunning during the last hour and she did the eye roll (sometimes associated with a hand wave) at least 20 times. It is just really rare - and frustrating because nobody has answers - and we just want to be able to help her. I do appreciate your help.