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My son's light-induced tic- seizure-related? Cause?
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Anon_59622 posted:
I don't know if this is a form of seizure or related, but we haven't gotten a real diagnosis and we need help- at least to know who to see, what tests to do.
My 8-year-old son has had this odd tic for a little over a year, and it's gotten a bit worse. He reacts to bright direct light, most often sunlight, by turning toward it, blinking and waving his hand in front of his eyes. Often this includes a sudden 'jump' or 'twitch'. Here is a clip of this behavior:

http://www.youtube.com/watch?v=wVYTstTC1Wg

We took him to a pediatric neurologist, who said his EEG was normal and said it was just a habit. We don't agree with that. It seems something like Tourettes but I haven't seen that Tourettes is light-induced.
Where to turn? Does he need a CT scan or MRI? Counseling? Could it be something like a stutter?
Again I apologize if this is not the right forum.
Thank you.
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dancer86442 responded:
Hi Mom,

I apologize for not answering sooner. Life kept interfering & I wanted to get facts after watching your video. So, please let me know if you are still w/ us.

Here is some Info about what I suspect is happening.

Reflex Epilepsy.

http://www.epilepsy-info.com/html/reflex.html

http://www.epilepsyfoundation.org/aboutepilepsy/syndromes/reflexepilepsies.cfm

Please Print this Info out. When you get a second opinion, you will know what to expect in the way of answers. It is sad that we have to do our own Research at times to Know as much or More than our DRS, in order to get help..

I agree w/ the EFA, I would use polarized glasses & see if that helps reduce the 'epiosdes'.

You may be able to watch others' w/ reflex Ep on you tube. Kinda compare notes.

Seek the Opinion of an Epileptologist (seizure specialist. We have a list of DRs here on WebMD. But, there is a list compiled by Patients on epilepsytalk.com &/or epilepsy.com.

P.S. you are definitely on the Rite forum. I do hope you will stick around &/or keep us posted. I promise I will Try not to take so long to reply, again.

HUGS!

Love Candi
 
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rwhitlock replied to dancer86442's response:
Candi-
First of all- it's "Dad"-
Secondly- thank you so much! ("Mom" thanks you too.) I certainly appreciate all that doctors do, but it is frustrating when they can't at least point us in the right direction. Thank goodness for the internet! Hopefully we'll be able to get our guy some help, armed with a little more information now.

God bless!
 
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dancer86442 replied to rwhitlock's response:
Hello rwhitlock, (Dad & Mom)

Thank You for your reply. I truly understand about Docs. I'm fixing to change 2 of my DRS cuz they just Don't do their job. And/or won't listen to me!

I forgot to add in my previous post. Please, seek More than 1 opinion from DRS about your son's condition. Our Resources has a link for 'Questions for Doctor. Please, print it up & take it w/ you. I realize the DR won't have time to go over All the questions during a visit. But, if they answer just a few at a time, that's Good. If they can't give you answers, then definitely seek another DR.

Time & Patience. It will require Both! The DR/med merrygoround may seem endless, even pointless, at first, but, stay on the merrygoround till you get answers & a treatment that works for your child.

Speaking of treatments, have you read any Info on the Ketogenic Diet, yet? Do some 'homework'. This may be a better alternative than meds. You just gotta convince your DR.

God Bless & Hugs to you & yours.

Love Candi
 
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rwhitlock replied to dancer86442's response:
Reflex epilepsy seems a likely culprit (he reacts to light, and his mother has had seizures), but not for sure. The odd thing we want answered is this: he is somehow drawn toward the light, and will sometimes leave shade to go into the light and perform the tic. He doesn't want to, but is compelled to. We haven't yet found that tendency, or compulsion, whatever you want to call it, in descriptions of reflex epilepsy. That's what makes us wonder about some possible psychological explanation, or it's a tic aggravated by stress, or.....sigh.
 
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dancer86442 replied to rwhitlock's response:
Hello Dad,

Well, Mom having seizures certainly puts the whole situation in a new light.

So, I have more questions. When he walks toward the light, does he respond to you or others'? Or is he more like in a daze?
You do realize he can be experiencing more than one type of seizure. One that forms into another?

Sigh..... If you suspect psych problems then, Yes, your next step may be a visit w/ a Neuropsychologist. It wouldn't Hurt!

Love Candi
 
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Reinardt responded:
My son Reinardt is now 10 years old. Age 5 he contracted Meningitis, 4 days later he got Guillain Barre Syndrome, 19 months later (now age we noticed that he rotates his eyes when exposed to direct sunlight, shortly after he started waving his right hand once in front of his face and rotating his eyes. With his medical history we immediately thought that it must be due to his illnesses. Took him to Paediatric neorologist - diagnosis : Photosensitive Epilepsy. We immediately started with Epilim. According to dr symptoms would stop after 3 months - it's now 2 years, many tests, 130 pills per month and the symptoms are still the same. I've stopped all the meds and are now dealing with it by letting him wear a cap or sunglasses when outside. I even took him for a second opinion - more tests, increased the Epilim meds and then refered us to a Psycologist. My son had problems dealing with day to day things due to die extream trauma he experienced with Guillain Barre Syndrome (please Google this illness if you don't know it). Psycologist just added more meds - our son became a zombi and still the "tic" continued. During a consultation with the second dr she actually mentioned that it might be a tic, but the fact that his first EEG was positive (3 spikes) caused that she hesitated to diagnose it as a tic.

I must be honest, we are still in the dark. He is totally not doing it for attention, because he has to deal with kids laughing at him, and constantly questioning his actions. He is so sick of trying to explain to kids why he does it. It's making him depressed - so by the way he started taking anti-depressant meds straight after GBS for a while and again for a month last year Nov, just to help up lift his moods, because of this "cannot say what" problem. I've been surfing the net for answers but nobody understood what I'm talking about. Then today I saw your son's YouTube video. I felt like crying, because what I saw was almost exactly the same as my son. The only difference is that Reinardt doesn't wave his hand more than once at a time. Yes, he is also drawn to the sun. I ask him to try his best not to look at the sun or not to lift his hand, but it's a daily battle. We don't know anybody else with the same symptoms so he is not copying somebody's actions. It just started all of a sudden. We live in South Africa and yes sunlight is part of our daily lives. The sun really hurts his eyes and when driving in the car, he would actually try to hide from the sun because it hurts his eyes. If this was a self-induced action, why would any child put himself through it if he is not gaining anything from it, except a lot of questions and kids looking at him strangely. I would appreciate it if we can email each other to get more info to help us help our kids.
Regards from South Africa
 
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rwhitlock replied to Reinardt's response:
Sorry I didn't respond sooner, I didn't get a notification of your response.
I found posts on other forums about the same behavior, beginning with extending the neck back and rolling the eyes, and progressing within months to the hand-waving. In each case it affected boys 7-12. So far I haven't gotten in touch with any of these other parents.
We are still seeking answers. I don't have any more information for you, but I'll update you on our progress. Please let us know how your son's doing.
Randy
 
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dancer86442 replied to rwhitlock's response:
Hello Randy,

Unfortunately, WebMD seems to have Problems w/ notifications. That's why I try to chek in once a day & others' seem to chek in once a week or so. I just found this site yesterday. If you register w/ them you can ask your questions & a Licensed Neuro will respond w/in 1-2 weeks.

http://medhelp.org/forum_disclaimers/show/135

Hopefully, Their 'experts' are willing to say more than Our Previous 'expert'.

If you go to Your Profile & post your Email Addy there, Reinardt will/mite respond. ( I cheked & they didn't leave an Addy in their profile. I'm not sure if you wanna do That, but, it would be Nice for the 2 of you considering your boys have similar 'episodes'. Who knows, maybe they have found some answers by now. I can 'dream'! May I ask why you didn't contact the other forums' parents? Just too busy???

I Hope this New Year will be good to you & your family. I hope you find the answers or at least a treatment for your son.

HUGS!

Love Candi
 
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rwhitlock replied to dancer86442's response:
Thanks Candi!
We'll definitely post on that site.

I've got my email listed on my profile.
As for the other parents, I replied to their posts, as well as sent them private messages via that forum...their contact info wasn't listed. They have not responded so far.
Randy
 
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dancer86442 replied to rwhitlock's response:
Hi Randy,

I had read this B4 & forgot. I was doing some Research yesterday & re-read the Info. This may be worth discussing w/ his Drs. From Medical News Today: An Answer To A Mysterious Movement Disorder Discovered in the Genome:

http://www.medicalnewstoday.com/releases/239317.php

Childhood Disorder Called PKD Linked to Genetic Mutations

http://www.medicalnewstoday.com/releases/239414.php

Hope Reinardt reads this too.

As for Forums, I know how it goes. PPL post & never respond. They ask for info, get support & Leave.

Not me! In Sept, I will have been a member of this site for 20 yrs! (Becuz of changes in WebMD programs my History, length of membership, on this site has Changed. ) I know there are many aspects to Epilepsy & I Want to Learn More. I Know there will always be questions, so, if I can, I will Help find Answers! And I Always Want to Know how my Friends/members are 'coping' & continue to support them. The only other site that seems to have a Steady Response from Lots of members is posted in our Resources. coping-with-epilepsy.com Want more Opinions? Chek them out!

HUGS

Love Candi
 
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rwhitlock replied to dancer86442's response:
Update: a couple of weeks ago, having an exhausting day, we let Isaac take responsibility for putting himself to bed. The next morning, we found he had chosen to stay up all night. Later that day, he had a seizure. Obviously this was a scary experience. But we're hoping it may help to nail down his tic as perhaps epileptic activity of some form, not to mention reinforcing to him the importance of sleep.
 
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dancer86442 replied to rwhitlock's response:
Hello Randy,

Maybe you should consult his Neuro about a Video EEG. It would be done in a hospital EMU (Epilepsy Monitoring Unit) a sleep deprivation is one of the methods they use to induce/provoke a seizure. It Mite Confirm Epileptic activity & more important Where the activity is coming from.

Thanks for the update. I guess some lessons in Life, we just have to learn the Hard way. Kids especially. I swear, they think they are invincible.

Love Candi
 
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rwhitlock responded:
Here is a great resource about this, if you haven't found it yet- called "Sunflower Syndrome"

https://www.facebook.com/pages/Sunflower-Syndrome-Self-Induced-Photosensitive-Epilepsy/502595293101717?hc_location=stream
 
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dancer86442 replied to rwhitlock's response:
OOPS Guess I should have read this message First. :0 Yes, I visited this page after reading her Story on another FB Groups Page. Very Interesting!

Is this the diagnosis for your son? How is he doing? How are you & Mom coping?


Welcome Back! And Thank You again for the Link. I am sure others' who visit WebMD will be Interested in learning More about this Very unique Syndrome. Hugs!

Love Candi


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