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At a loss!!!! Sunflower syndrome
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jennandkc posted:
Today was the first full day that we have had since we found out about our daughters rare form of epilepsy called sunflower syndrome. I talked to the staff at our daughters school and felt like they didnt care or even wanted to help. We have been going through this for 4 years and no doctor could help us. It was my husband that found out what she had. I also just found out that if she rubs her head while in the sun this could make everything worse. I want a dr. for my daughter that has delt with this ( sunflower syndrome) before, not just other types of epilepsy but her kind. I will travel anywhere but i want someone i know that has delt with this to help her. I am scared about her taking the medication and it changing her or bad side effects. I will do anything for her and to make her life normal. My heart is broken for my child and i feel helpless. Can anyone give me a name of a dr. who has seen this before. i have googled it. I have serched as much as one can in the last 24 hour and cant find a dr. She has some behavioral problems. She is a great wonderful loving child but not only is she 8 and just being a kid. she seems to have more problems with listening than other kids er age. I read this can happen. Does anyone else have children with behavioral issues? I have taken her 6 different doctors and get no where. I get no where with her school and between everything that has been going on for 4 years and now finally knowing what is going on with her and still no one can or will help. Advice please someone!!!!!!
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dancer86442 responded:
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
 
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dancer86442 responded:
I forgot to add: Our epilepsy Health Center has More info on Photosensitive Epilepsy. Chek Resources for the Link provided by our moderator, Haylen.
 
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hula_dancer73 responded:
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
 
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dancer86442 replied to hula_dancer73's response:
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.
 
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stormysunnymarie responded:
My cousin has the same thing, he is twelve, no doctor believed us when we said his seizures were self induced until last year. I cannot give you his doctors name through this website, but the test you must insist they perform on your daughter is a 24 hour EEG. If she has a self induced seizure during this time it will be recorded and the doctor will see that she caused it herself.
 
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dancer86442 replied to stormysunnymarie's response:
Stormy, Prescription Polarized Sunglasses will Help!
 
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SunflowerCyndi responded:
I am 41 and have dealt with this my entire life. I took Depakote for 6 years. Not only did the medication control my urges to induce, but after long term use, my seizures completely ceased. It took years to diagnose my condition and properly treat. Dr.s believe polarized, colored lenses help; however if I want to induce, I will take them off and find the sun. It's frustrating for a child to be teased by others for something they are unable to control or comprehend. It's also very frightening coming out of a stupor. We lose track of time, who we are, where we are, and find difficulty speaking. Even if only for a few seconds, I rarely recalled conversations or incidents. Not only did I act out as a child, I became an overachiever. The more seizures you have, the more you want & need. After an hour or two in the sun, I slip in convulsions. What drugs do for an addict, waving my hand in front of my face does for me. It's that intense and satisfying. My folks traveled from AZ to CA for treatment. My Dr is amazing. She was a pediatric neurologist. I understand now the challenges and sacrifices my mother made, and am grateful. The best advice? An experienced Dr, patience, and STAY OUT OF THE SUN!!!


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