Epilepsy Community

Hello Jenn,

I saw your page on FB just now. You have several 'Likes' but, no comments. I know I saw an EP Parent Group posted on one of my groups, but, someone removed it.

So, First: WebMD policy prohibits us revealing DRS names. They do have a Tab/tool to Locate DRs though. Another site I 'Like' has a List of Neuros/epileptologists recommended by others' w/ Epilepsy. epilepsytalk.com Link is posted in Helpful hints or just use your Search tool. No need to join to read the Info/articles. I think your best bet would be to contact an epileptologist. They Are Neuros, but, go thru 2 more yrs of training for Epilepsy Only! From there, all you can do is call any recommended DR to Ask if they have dealt w/ Sunflower Syndrome.

Problems w/ Listening? Are you sure she is 'hearing' you? Children/adults w/ absence seizures do not respond when spoken to. Some can hear you but are just unable to respond. Others' have 'no clue' of what was said or done during the Seizure. epilepsytalk.com has an article about behavioral issues, too.

I posted a new link for Parents & Teachers in Resources. Please share it w/ her teachers. It Mite Help! We had a teacher asking questions about a child's' seizures & behavior issues a few weeks ago. So, you are Not alone.

Medications: Yes, if our systems don't like a med, it can cause Side effects. But, side effects are what we Watch for. Not what will always happen. Medications, are All 'Trial & Error'. Even Over The Counter meds. It depends on how our systems metabolize any given med.

If you Don't wanna do Meds, then seek a Homeopathic MD or 'naturalist'. It has been Proven that allergies to foods/bevs/additives are just as likely to be an underlying cause of Seizures. And once the culprit is determined & removed we cease having seizure activity. The Ketogenic Diet is Recommended for Children. But, there are other Diets, also. Again, search epilepsytalk for the article on Diets for Epilepsy.

I Hope this has helped some. Please keep us posted. I'd like to know More about this Syndrome. It's been a while since anyone has mentioned it. Know I care! HUGS!

Love Candi

I forgot to add: Our epilepsy Health Center has More info on Photosensitive Epilepsy. Chek Resources for the Link provided by our moderator, Haylen.

I got that book that wsa really detaied and nothing was even mentioned about what sunfower syndrome was. NOTHRING!

I tried to helpp you but it was futle.

I hope your doc who dxd it can come to some conclusions as to hopw to help it and her and toget her on SOMETHING that might give her some relief.

hula_dancer

Nancy, Just so you know. Jenn posted this to help Inform others' about this Rare Epilepsy. She is on a Journey to find Others' w/ the same or similar problems. She now has a Facebook page dedicated to sharing what her & her husband have learned. I have met 1 other person on her site, that has similar/same symptoms. They found several 'cases' thru their research. It is noted on 1 of Bruce's old links, too. Although it was just reported on their site about 5 yrs ago. So, it is still fairly New! And Very Rare. Or maybe not so Rare. Could be just 'unreported' or noted by Drs/ Researchers. You know how that goes.

What Happens: the person is Drawn to the Sunlight. It creates a happy, euphoric sensation & they can't stop themselves. They wave their hand in front of their face & it causes a Strobe lite affect. Similar to seeing light flashing thru tree leaves. After reading what others have said, I Think when she is rubbing her head she is Excessively Blinking (yes, Mom noted that, too) and again a strobe effect.

BTW: Her DRS were unable to diagnose this. Her Hubby did the Research & found the Info! She just needs/wants a DR who Has dealt w/ this. I will keep you posted as I learn more.