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Reflexive Seizure Disorder or Sensory Seizure Disorder
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dsmith34 posted:
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. Has anyone ever heard of this or something similar?
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dancer86442 responded:
If the Ambulatory EEG was 'abnormal' I don't understand why your neuro is changing his Opinion. That makes No Sense!

There is a Site about 'Sunflower Syndrome' on FB. Your Daughters' actions do seem similar. I'm not a DR, but, Reflex &/or Photosensitive EP is possible. Not everyone w/ Photosensitive Ep experiences All light triggers.

Head Blow? Yes, can be a cause. Same with Mercury. But, a Homeopathic MD can help De-tox her if this is the case. I'm not sure about Yeast. I do know Gluten & aspartame & other food allergies are capable of Triggering seizures. Potassium Levels & Hormones should be cheked too. There is a Blood Test that can be done to determine Genetic EP.

Personally, I would be seeking Another Opinion! Preferably an Epileptologist (seizure specialist) Chek epilesytalk.com for Drs recommended by others' w/ Ep to see if any are listed in your area. Hugs!

Love Candi
 
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An_250188 responded:
My 16 year old daughter has the same thing that also started three years ago. It is only caused by natural light. Her neurologist put her on medication, but I did not see any real improvement. They changed her medication and still there was no change. Perhaps it would have gotten worse without medication, but if the meds were not doing anything I wanted her off of them. Her neurologist ordered a 72 hour video EEG in the hospital. The hospitals neuroligist confirmed that she has reflexive epilepsy. They noticed abnormalities in her sleep patterns. I am going to follow up with her regular neurologist to see the best way to treat this. Like your daughter, it only happens in natural light. My daughter also seems to flutter her eyes occasionally when she speaks without being aware that she is doing it. She is also unaware of what happens when she looks at the sun. Has your doctor prescribed medication and if so which one? Has it helped at all?
 
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dancer86442 replied to An_250188's response:
Hi Mom,

There is more info on epilepsytalk.com about 'sunflower syndrome' You don't have to join to read the articles. Use her Search tool: *40 Types of Seizures* As for medications: to treat any form of Epilepsy, it will be, unfortunately, 'trial & error'. It will take Time & Patience to find a med/treatment that works for your daughter. You can use the 'blue' lenses to see if they help. But, from what I have read Prescription Polarized glasses work best.

Please, start a Journal for your daughter (more info under Tips)

Keep us posted. Know we care. HUGS!

Love Candi


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