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Old 12-13-2011, 04:29 AM   #1
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Sunflower Syndrome

Is anyone here familiar with Sunflower Syndrome? There seems to be limited information on this on the web. I believe that it is essentially found in children, and involves light-induced rubbing by the child above their eyes with one of their hands. My 12-year-old daughter has this, and after years of visiting a neurologist, we've received no helpful information that would assist our daughter in overcoming this. She will sometimes put herself into a situation where she will stimulate a seizure from this constant rubbing. On two occasions, she has even rubbed so much while staring at the sun that she has lost her vision for a period of time. She also receives a lot of teasing from her classmates, as she often does it at school or on the soccer field. If anyone has any information on this, I would appreciate it!

 
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Old 12-29-2011, 11:41 PM   #2
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Re: Sunflower Syndrome

Quote:
Originally Posted by Anthony121 View Post
Is anyone here familiar with Sunflower Syndrome? There seems to be limited information on this on the web. I believe that it is essentially found in children, and involves light-induced rubbing by the child above their eyes with one of their hands. My 12-year-old daughter has this, and after years of visiting a neurologist, we've received no helpful information that would assist our daughter in overcoming this. She will sometimes put herself into a situation where she will stimulate a seizure from this constant rubbing. On two occasions, she has even rubbed so much while staring at the sun that she has lost her vision for a period of time. She also receives a lot of teasing from her classmates, as she often does it at school or on the soccer field. If anyone has any information on this, I would appreciate it!
Hi There,

my daughter is now 14 and was diagnosed with this type of epilepsy when she was 8. We are still struggling with how to control the self inducing to the point we are keeping her out of the sun. At first she would lose her vision but know it's gotten to the point where she has collapsed into a seizure. It's not good to let your daughter hand-wave. It can lead to a more severe seizure. We have my daughter on extended release lamictal. If this doesn't help, we are going to try depakote. The problem with depakote is weight gain and spacey-ness I'm not sure we want to deal with. What meds is your daughter on?

 
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Old 12-30-2011, 03:36 AM   #3
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Re: Sunflower Syndrome

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Originally Posted by yollee29 View Post
Hi There,

my daughter is now 14 and was diagnosed with this type of epilepsy when she was 8. We are still struggling with how to control the self inducing to the point we are keeping her out of the sun. At first she would lose her vision but know it's gotten to the point where she has collapsed into a seizure. It's not good to let your daughter hand-wave. It can lead to a more severe seizure. We have my daughter on extended release lamictal. If this doesn't help, we are going to try depakote. The problem with depakote is weight gain and spacey-ness I'm not sure we want to deal with. What meds is your daughter on?
Our daughter is on Keppra. I don't think this helps with the rubbing though. We also try to keep her out of the sun, although it's difficult to do this all of the time. I've heard that some kids outgrow this eventually. I am not comfortable with letting my daughter learn how to drive a car as she gets a little older, if she still has this problem.

 
Old 12-30-2011, 09:42 AM   #4
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Re: Sunflower Syndrome

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Originally Posted by Anthony121 View Post
Our daughter is on Keppra. I don't think this helps with the rubbing though. We also try to keep her out of the sun, although it's difficult to do this all of the time. I've heard that some kids outgrow this eventually. I am not comfortable with letting my daughter learn how to drive a car as she gets a little older, if she still has this problem.
Yeah, nothing can stop the hand-waving in front of the eyes because it feels euphoric to them. When my daughter lacks sleep or is stressed about something, she tends to do it more to ease her tension. She already knows that driving is not an option at this point. We are just trying to stop the urge to self-induce. You are right about the lack of info online too. When my daughter was diagnosed back in 2005, I spent hours and hours doing research and you can see by finding this thread, I'm still researching. I have also been told that the kids tend to grow out of it but I'm a little discouraged since her seizure have gotten more severe. I wish you the best, it's tough for them because the condition is rare and hard for people (especially other kids) to understand.

 
Old 12-30-2011, 04:43 PM   #5
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Re: Sunflower Syndrome

Has your daughter received any teasing from other kids if she rubs in public? We've seen other kids mimic her rubbing, and I believe it has affected her socially. If anyone tries to stop her from rubbing, she gets defensive, as it does seem to feel euphoric to her too. Apparently the physical pleasure is still stronger than any negative social effect that she may experience from other kids.

 
Old 07-25-2012, 09:33 AM   #6
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Re: Sunflower Syndrome

Hello, I know this forum is a little bit old but I figured that I would post anyway. I have sunflower syndrome, and have had it since I was about seven or eight. It started off with me doing the classic hand waving over my right eye while facing the sun directly. I would and still do get a euphoric sensation from it. Before I was medicated I was unable to see or hear things around me, and my little brother would have to guide me around to keep me from falling. I got medicated soon after my parents discovered that it was epilepsy. They first put me on Depakote, but it made me gain weight so I switched to Lamictal, and that made me depressed and suicidal. My final and best medication that I am on now is Keppra. It makes me feel a little foggy headed but it works. I have only had one grand mal seizure, and that was when I was 16 years old. I had just pushed myself too far with the hand waving. From then on I still do it, but I know exactly when to stop. I am 22 years old and still find it very hard to control myself. I find that it's easiest to do it when I am bored or feeling sad. I always do it when no one is home, which is dangerous, but I get in huge trouble if someone catches me. It's like a drug. It's very very addictive. If there was an easy way to stop doing it, I would gladly like to know how. I have never ever met another person who has the same condition as I do. It doesn't impact my life negatively really except for having to take medicine two times a day. And, I cannot drink or stay up very late because staying up late causes me problems. I wish you guys the best of luck, and hope that what I said helps a little bit. What you guys were explaining sounds exactly like what I've been dealing with basically my whole life. I can drive and do pretty much all the normal things that normal people do, I just cannot do drugs or drink alcohol, which isn't really a bad thing. I keep wishing for the day when I will grow out of it, but I'm not sure if it will happen for me because I have already passed the age when most people grow out of it. But my dad and my older brothers have epilepsy, and they seemed to pretty much outgrow it in their late 20s, so I have a little bit of hope. I hope your kids will grow out of it too.

 
Old 07-27-2012, 08:28 PM   #7
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Re: Sunflower Syndrome

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Originally Posted by sunchip View Post
Hello, I know this forum is a little bit old but I figured that I would post anyway. I have sunflower syndrome, and have had it since I was about seven or eight. It started off with me doing the classic hand waving over my right eye while facing the sun directly. I would and still do get a euphoric sensation from it. Before I was medicated I was unable to see or hear things around me, and my little brother would have to guide me around to keep me from falling. I got medicated soon after my parents discovered that it was epilepsy. They first put me on Depakote, but it made me gain weight so I switched to Lamictal, and that made me depressed and suicidal. My final and best medication that I am on now is Keppra. It makes me feel a little foggy headed but it works. I have only had one grand mal seizure, and that was when I was 16 years old. I had just pushed myself too far with the hand waving. From then on I still do it, but I know exactly when to stop. I am 22 years old and still find it very hard to control myself. I find that it's easiest to do it when I am bored or feeling sad. I always do it when no one is home, which is dangerous, but I get in huge trouble if someone catches me. It's like a drug. It's very very addictive. If there was an easy way to stop doing it, I would gladly like to know how. I have never ever met another person who has the same condition as I do. It doesn't impact my life negatively really except for having to take medicine two times a day. And, I cannot drink or stay up very late because staying up late causes me problems. I wish you guys the best of luck, and hope that what I said helps a little bit. What you guys were explaining sounds exactly like what I've been dealing with basically my whole life. I can drive and do pretty much all the normal things that normal people do, I just cannot do drugs or drink alcohol, which isn't really a bad thing. I keep wishing for the day when I will grow out of it, but I'm not sure if it will happen for me because I have already passed the age when most people grow out of it. But my dad and my older brothers have epilepsy, and they seemed to pretty much outgrow it in their late 20s, so I have a little bit of hope. I hope your kids will grow out of it too.
Hi Sunchip,
Thank you so much for your considerate response! Our daughter turns 13 next month, and still struggles with the rubbing when any bright light is in her face. Your comments about getting a euphoric sensation describes exactly what my daughter seems to feel. She still takes the Keppra, but I don't know how much it helps her? We have a couple of major frustrations. First of all, we can't find any help for my daughter from any doctors. Our neurologist and family doctor know nothing about Sunflower Syndrome, even after we provided research material for them to study. They essentially dismissed us for suggesting that our daughter has a problem that they know nothing about. We also had our daughter visit a behavioral counselor to explore this "problem" that she has, and the counselor spent months working with her on learning to share her feelings by playing with different games. A visit to a psychiatrist resulted in a myriad of tests that produced a comprehensive report of her frustrations and anxieties, all of which we were fully aware of already. None of these medical professionals paid any attention to her rubbing condition when facing a bright light source. So your posting was about 10 times more useful to me than all of the medical visits that we've had, combined! Although I'm not completely thrilled to hear that you still feel the desire to rub at 22 years old, as I thought that all kids outgrew this in their middle teens, I am grateful to receive the information that this rubbing may last beyond my daughter's teenage years, so we'll know what to expect.
One observation I did make this summer is that my daughter, when facing the sun in having group pictures taken of her soccer team, did try very hard to prevent herself from rubbing. I had never noticed her attempting to control her rubbing desire before this time. Kids at school do notice her rubbing, and some have even teased or mocked her because of it, so the fact that she is starting to realize that her behavior is generating some negative reaction is a positive one for me. Did you experience any teasing when you did this during the early teen years?
Lastly, we wonder if there was any physical cause to our daughter's rubbing? When she was three and a half years old, our dog tripped her and she drove her head directly into a corner wall, which caused a very large bulge above her eye where she tends to do all of her rubbing. About 5 months after her injury, the rubbing behavior started. So we often wonder if this injury actually caused her to begin this rubbing? Did you have any sort of impact to your head that might have brought about this rubbing desire?
Thanks again for posting!

 
Old 07-27-2012, 08:51 PM   #8
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Re: Sunflower Syndrome

I'm so glad to hear that I was some help to you. Yes, I hated to tell you that I still do it at my age, but I have definitely been able to control my urges way more. When I was younger I thought about doing it all the time and was very sneaky about it. It was almost like an obsession. Now I hardly ever think about it, except when Im the only one home and it's sunny. If I'm with my friends or in public I literally never think about it. For me this was achieved by getting in trouble for doing it, and I did get teased a lot in elementary school for it. I think back on it and realized that they were simply curious because let's face it, it is something rarely seen. But I was such a sensitive kid that it hurt my feelings. There were the occasional kids who mimicked my hand movements.
I was interested to hear that your daughter had anxiety problems because that is also something I've dealt with my whole life. In fact, and I think your daughter may agree with me.. Even though it is a seizure disorder I often used my hand waving to get the euphoric sensation to escape from my anxiety. The best way I can describe the feeling is like when you get a hug from someone and you just feel warm and happy and content.
I've done a bit of research on the syndrome and found that the hand waving (or rubbing) effect actually somehow produces dopamine. In a way it's like a drug.
Please feel free to message me back, as I have never really gotten in contact with anyone who knew of someone else with this condition.
Also, I don't recall injuring my head before my seizures developed. My neurologists never seemed to understand my condition either. They would actually ask me questions to learn from me. Weird.
I totally believe we can defeat this if we learn how to controll ourselves. It's an addiction as well as a disorder.

 
Old 07-30-2012, 10:31 PM   #9
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Re: Sunflower Syndrome

Also, what finally got me diagnosed was my mom videotaping me doing it and showing it to the doctor. Because doctors really don't know what we're taking about because it is such a rare condition. I am pretty positive I've been through all the same things your daughter is going through.

Last edited by moderator2; 07-30-2012 at 10:35 PM.

 
Old 08-04-2012, 06:24 AM   #10
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Re: Sunflower Syndrome

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Originally Posted by sunchip View Post
Also, what finally got me diagnosed was my mom videotaping me doing it and showing it to the doctor. Because doctors really don't know what we're taking about because it is such a rare condition. I am pretty positive I've been through all the same things your daughter is going through.
Thanks again for your posts! I can see where videotaping the waving and showing the video to the doctor would help them better understand what is going on. Our daughter doesn't seem to do the waving when she visits the doctor, and since it is so rare, I shouldn't be surprised that they don't understand it? What I'm now wondering is, even if the doctor does see the waving, is there anything new they could do to address it? Our daughter is already on Keppra, which you mentioned is helpful for you? Beyond that, the rubbing seems to be as much of a behavioral issue as it is a neurological one? It sounds like the approach we should take is to make our daughter aware of the fact that she can or should try to learn to control the rubbing, because doing it too much could put her into a seizure? Does this make sense?

 
Old 08-10-2012, 06:36 PM   #11
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Re: Sunflower Syndrome

Yes, that's exactly the right idea. It's not easy to do when you are younger because it really is such an addicting thing. But I think if she becomes aware that it is not only a dangerous thing, but it's also not 'socially acceptable', it will help keep her from doing it. Honestly, I didn't stop doing it around people because I knew it was dangerous, I stopped doing it because I wanted to be cool and I didn't want people to stare at me haha. But yes, definitely inform her of the dangers of doing it. And it definitely gets easier to control once you really try.

 
Old 02-26-2013, 05:28 PM   #12
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Re: Sunflower Syndrome

My mom has been inducing seizures since she 5 or 6. She would stare at the sun and blink her eyes. She would do it to escape stress. Her journals have written, this will be my last seizure then I'll get it together.

She died in December 2012 she was 60. She had induced two seizures that say and the second one seemed to be the one that killed her.

I am trying to find out more to to see if this is considered a form of self harm. I am grateful to Sunchip for posting her experience.

Has anyone else heard of this? Is it a form of self harm? She had been told she had a dissociative disorder, does that play into it?

Thank you in advance for any information.

 
Old 02-26-2013, 06:49 PM   #13
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Re: Sunflower Syndrome

First of all, sorry to hear about your mom. I have never heard of anyone past their 30s with this type of epilepsy. While I would not call it a form of self harm, I would call it a form of self medication. Think of it as meditating, only you get a physical reaction similar to that of being high. And why do a lot of people get high? To escape stress. Although, it is not only to escape stress because the behavior itself is addicting. Dopamine is released, so we crave that euphoric sensation. The quote from your mother is eerily familiar. I think those of us who have it know exactly what she is talking about. Was she medicated?

 
Old 02-26-2013, 06:52 PM   #14
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Re: Sunflower Syndrome

Also if you don't mind me asking, how was it determined it was the seizure that made her pass?

 
Old 07-12-2014, 01:45 PM   #15
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Re: Sunflower Syndrome

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Also if you don't mind me asking, how was it determined it was the seizure that made her pass?
The autopsy. My father told the ME (Medical Examiner) that she had induced at least two seizures the day she died. Her seizure activity, all done with the sun or light bulb, had increased SO MUCH over the last year. The ME Said it was SUDEP as nothing else was found.

Seems this was part of her mental illness. Personality disorder
, so psychiatrists know about this.

She would stop anti-seizure medication and she would stop anti-depressants because it would either stop her from being able to do it or it didn't have the same effect on her. So she always found an excuse not to take medicine..

 
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