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Old 06-09-2006, 10:21 AM   #1
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Join Date: Jun 2006
Location: Ponca City, OK USA
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pcmom HB User
I need info

Hi
I just found this message board.
I really need info,advice,etc.

My son just had a seizure yesterday while he was out of town at a church camp. He had his first seizure three years ago while playing a video game. We took him to a neurologist a found out he was photosensitive. We opted not to put him on medication since he had only had that one seizure. He stopped playing video games on the TV. (The bigger the screen, the bigger the chance of having a seizure) He still plays gameboy sometimes. About a year ago, he was spending the night with a friend and they were playing video games. He started feeling like he was having one and told the boys parents. They called me and we went to get him. He did not have a full-blown seizure and was Ok. Yesterday, while at church camp he had another one. This one, however was not caused video games or any other "photo-sensitive" trigger. He was just walking outside and said everything went 'blurry' and that he knew he was having one and went down to the ground and yelled for help. The next thing he remembers is laying on bed getting ready to be put in an ambulance. The hospital wanted to admit him and observe him all night. After speaking with the pediatrician, he felt it would be Ok for us to bring him home and observe him ourselves.
I think the seizure may have happened this time because he didnt get much sleep all week, was out in the hot sun all day and he broke his glasses the first day of camp so the strain of trying to see could maybe also make him tired. What is your opinion? Do you think all of those factors could have been the cause? Because seizure meds have problems of their own and he doesnt have them frequently, I just dont feel comfortable putting him on them........ Just a worried mom here needing advice. THANKYOU!

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Old 06-09-2006, 12:37 PM   #2
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Join Date: Jul 2005
Location: north of somewhere nice
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neurowreck HB User
Re: I need info

Could also be the changes in light from going from shade to sun at camps with nature trails, or foot paths between activities...plus all of what you were talking about...the glasses breaking may have made him more sensitive to things that normally don't matter much, but with photosensitivity, do.....

 
Old 06-09-2006, 02:25 PM   #3
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Join Date: Feb 2004
Posts: 685
tkdmom96 HB User
Re: I need info

Hello and welcome to the E boards,

Our daughter was diagnosed at the age of 8 months and had seizures for 15 years and was on 7 different medications. She had surgery June 2004 and has been seizure free since. She will be 18 in July!

I am a straight shooter and the people who know me here on the E boards for the last 4 years (where ALL of my posts are from, not a bunch of other boards, all 680+) know that I love to help and that you will get an honest answer from me, with no sugar coating.

A few things that I have learned over the last 15 years (from doctors and NP)...and I do not intend to be the bearer of any type of news...as I am not a doctor or nurse, just have been through ALOT with our daughter...but these are facts >>>

1) Your son has now had 3 seizures, that you are aware of. 2 or more seizures is cause for concern and is by most doctors considered a seizure disorder. Whether it be light sensitivity, illness etc. There is a reason somewhere that his body triggers into a seizure, and needs to be investigated.

2) Seizures that are left uncontrolled (no matter how "minor") can cause more problems down the road. As time goes on, pathways are created that can make having another seizure that much easier for the brain. Seizures can also "extend" and begin to include other parts of the brain as these pathways continue to be created. This was shown to us by our Epileptologist through EEGs and VEEGs.

3) It doesn't surprise me that your son had a seizure at camp. If he is indeed photosensitive, the woods or campground would be the perfect place for something to happen. All of the sun trying to come between the leaves of the trees (and as the trees sway and move causes the filtered light to move/flicker more), the glare/glistening/reflection of the sun on the pool or lake water, the movement of the clouds across a sunny blue sky...etc. These are all irritants of the photosensitive person. Same with COMPUTER screens, TVs, videos games, disco balls, camera flashes, strobe lights, and flourescent lighting in stores and schools.

I would contact your doctor and set up an EEG as soon as possible. If school is out, it is the PERFECT time to get a jump on things, before the new school year starts. I would request the "sleep deprived" version of the EEG. And it sounds as though they really need to push the photosensitive part of the testing. Our daughter had no problem with lighting conditions during EEG testings, everyone is different.

Stress is another factor in having seizures. He may be worried that he has had 3 now and may have some anxiety, which does also go hand in hand with seizures. Lack of sleep, change of environment, and broken glasses could also have caused a low seizure threshold, but the point still remains...he has had 3 seizures now...for some reason. I know it is difficult to deal with, I was there for a LONG LONG time. But modern treatments for Epilepsy are SO different, even compared to 15-16 years ago! Many doctors believe in the least amount of medication, with the least amount of side affects to treat the seizures the person is having.

All my best to you and your son and if you have more questions, please post...

Vicki
__________________
Proud mom of Katie, the strongest and bravest person I have ever known! GBTG.

 
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