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photosensitive diagnosis 7 yr old?
Fri, 06/18/2004 - 11:27Topic: Family & Friends
Hi,I,m a new member neurotic mom of a seven yr old girl.I was falling asllep one night, she was nest to me, I hada "normal Jerk". when this happened, she informed me that she gets jerks and shakes on the playground "only in one area of the playground. I thought she was crazy till i started reading about photosensitive epilepsy. She is scheduled for aan eeg on wednesday mar. 24th.I am discouraged because of so many reports that eegs are not always accurate in diagnosing seizures. she describes the seizure in great detail: upper body stiffens, sholders up, head back hands with fingers straighted and pulled toward thumb, up on toes. It's amazing she has not fallen backward when you see the position she is in. she also hears echos. lasts about 5 seconds. upon inspection of the area where this occurs, there is a fence with one inch slats, when you walk past, light flickers through. seven year olds do not make up this kind of detail. If anyone else has photosensitive epilepsy or has info on the diagnosis of such, can you please let me know? Also, if anyone has an idea of what type of seizure this may be classified as? thankyou!
Comments
RE: photosensitive diagnosis 7 yr old?
Submitted by tibet2 on Mon, 2004-03-22 - 01:47
right now it is hard to believe this, but everything is going to be fine in the long run. i'm glad you got good sleep, even if it was early to bed and early to rise for you. partial epilepsies will have EEGs positive for E in about 50% of the cases. you will read estimates ranging from 20-80% ... 50% is a pretty good guess. it doesn't matter. a good neuro will be able to give a diagnosis without a positive EEG - and if she doesn't have E, but has something else going on, then that will be diagnosed. your daughter will be able to tell the doctor what happens. that's how i have my diagnosis. sometimes people can have seizures and function very well. i have certainly had that happen. i had seizures for a decade before anyone really noticed. some of my friends noticed and i would just say i felt faint. i was always able to give my parents an excuse they bought. i certainly did have a reputation as an astronaut though ;-) i've had that kind of echo like hearing as well. it's a little strange, kind of like in a movie.... i was watching "the fellowship of the rings" last night and there is a time when gandolph speaks that sounds like a seizure. actually that movie has some good seizure like things in it. my new doc was initially doubtful that i had epilepsy because i haven't missed time - i was stunned when he said that.... and i thought about leaving then. but the more we talked the clearer things became to him. he's very nice and i like him a lot. but i have to say my initial impression was not great. sometimes it takes awhile to forge a good doctor patient relationship. the first meeting can be a getting to know you event. i was pleasantly surprised at how relaxed the second visit was. your primary care physician is almost certainly a wonderful doc, but isn't a neurologist. you are going to see a neuro aren't you?
RE: photosensitive diagnosis 7 yr old?
Submitted by e_nuffofthis on Mon, 2004-03-22 - 12:52
Hi Ann:Figuring out what type of seizure is very frustrating at first, but I think Tibet pointed out partial and that is what I'm thinking too... Purely photosensitive seizures are generalized seizures (idiopathic). That means she wouldn't be able to remember what had happened to her. The light could be triggering these episodes. I know, it's confusing. If she can remember everything that happened, it would be more like a simple partial. But simple partials can progress to complex and than into generalized tonic/clonics (grand mal). It sounds like she has been having these for awhile and it's great it never has progressed. Just have her wear sunglasses, they say the polarized lenses are better for this along with blue or green tint. If she is coming into a situation where there is flashing, have her cover one eye. I know how upset you are, been and still there....
RE: photosensitive diagnosis 7 yr old?
Submitted by anneellis on Sun, 2004-03-21 - 07:39
Hi Tibet2,Thank you for the reassurance! I fell asleep at 8:00 last night, exhausted from stress, now its four in the morning and im wide awake so i still feel a little nuerotic but it is nice to hear other people dont think so!The blanket and hat are a great idea! When you mentioned that a good percentage of people are self directed, what does this mean? If you mean diagnosis, this is also reassuring, but my primary care pediatrician wants someone to SEE this happening. NO PRESSURE!It's not really like he doesnt beleive her, possibly he thinks her account of what is happening may be different from what is actually happening. By the way,her account is not described to me verbally, i asked her to show me exactly what happens to her when she "gets jerks on the playground". She does the movement in a swift manner, risng to her toes, head back shoulders up with a small shake as i mentioned. Then i asked does anything else happen, she mentioned the echos in her hearing. She says this has been happening for two years (child perspective) so it is hard for people (DRS too) to beleive no one has ever seen this. Thank you so much for taking time to be supportive. This is a lesson in patience for me and i appreciate your kindness! .... Annie