Seizures in the card

[mjandresen]

Sort of off the subject but my son was recently diagnosed with myoclonic astatic epilepsy and I noticed that he has SEVERAL seizures when we are in the car. I don't know if its the lights or the speeding things going by but it does happen and I have told my sons neuologist and asked if he could be photosensitive and he said NO. Its very rare and I don't have to worry about it. But even when he is watching TV, seconds later, he is going into a absent stare or a Drop seizure. Any related stories?

[epileric]

I would suggest you mention to the neurologist all the times that your son does have seizures (if you haven't already) & ask him why he is so sure your son is not photosensitive & if "it's rare" is the only reason.

Also welcome to CWE. I moved your post to the foyer so that everyone else can give their greetings as well (hope you don't mind). What meds and/or therapy is your son using to control his seizures?

[Nakamova]

Hi mjandresen, welcome to CWE!

A number of CWE members have experienced photosensitive reactions. You might want to check out this thread:

Are you photosensitive?

People with reflex epilepsy can be triggered not only by flashing lights but also by patterns, vibrations, motions, or even certain sounds or pieces of music. Does your son react to fluorescent lights? The "Big Box" stores with all the fluorescent lighting are problematic for some.

Best,
Nakamova

[dfwtexas]

When I had my EEG done prior to my E diagnosis, the tech was explaining each part as we went thru it. When they did the light testing, he told me that was to check for photosensitivity but he said it was very rare too.
A few months after my E diagnosis, I notice lots of problems with lights, movies, etc and when I discussed with my neurologist he told me that if something is a trigger for me personally, I should never discount that. He said that there are a lot of triggers for his patients that don't fit into what's "normal or textbook", but that doesn't mean it's not real.
Photosensitive can mean a lot of different things....I have problems with driving or even riding in car at night because of the lights. Some people have problems with even being on computer, but that one doesn't bother me. Floursent lights are a big problem for me.
I would suggest keep list of those light sources that seem to be a trigger for your son and treat it as a trigger.
jenn

[Crystal11]

I definitly would tell neurologist again and again until they can test or prove totally that he isn't photosensitive. Sometimes, like in my case, I have troubles with specific lights or movements and only show driving responce while on meds, but not officially diagnosed with photosensitive epilepsy. Probably because during the EEG, the photo stimulation part only caused the driving response. But without meds, it probably would have caused a stronger reaction.

I would keep a journal of his daily activities that seizures happen around. If it seems like specific patterns of lights are causing troubles, then neurologist needs to take the seriously. He probably is saying that since there isn't immediate responce on EEG for it, or doesn't have solid proof of it yet etc..

I hope things go better for him soon and i hope that neurologist listens to you a bit more.
I would keep asking or letting him know what's up until he listens. Its something really important that you are observing. The neurologist has to depend on what family and friends say if he doesn't seem them on EEG or in the office.
Most neuros never see patients' seizures so other outside info or observations are important.

Please take care
Crystal

[huskymom]

Hi and Welcome!

If you a neurologist who says "no" right away, I think it may be time for a new one! Everyone is different, so every brain is different. That is the biggest problem for us because it is so hard to pin point anything! Hang in there and I hope that your son is finding relief soon!

[Dutch mom]

Hello, welcome from another mom to a mom,

My son has Lennox Gastaut syndrome (not a 'good' diagnosis, Lennox-Gastaut Syndrome is considered one of the most devestating childhood syndromes.) My son has had periods (months, years) with standard seizures when we were driving in the car but he is not photosensitive (he has had several EEG's with flash lights.)

It must be very worrying and frightening for you to find out about MAE while your son is just recently diagnosed.
I do know several parents (Dutch and Brittish) who have kids with Doose syndrome (MAE) and with Dravet syndrome (SMEI) which is related to Doose.They have many different seizure types and seizure patterns. But as far as I remember, none of the kids with Doose is photosensitive. Photosensitivity indeed is very rare in childhood epilepsy syndromes, I do know few kids with Lennox-Gastaut Syndrome and Dravet who are photosensitive.

MAE/Doose is, like Dravet's syndrome/SMEI, a seizure disorder associated with GEFS+, those types of childhood epilepsy and syndromes are inherited or genetic. Many kids first are misdiagnosed with Dravet or Lennox Gastaut untill genetic research points out MAE/Doose.

Kids with Doose usually develop better (cognitive, mental, physical) than kids with Dravet (and with Lennox-Gastaut Syndrome) do, more often MAE is ideopatic instead of symptomatic (a majority of Lennox-Gastaut Syndrome is symptomatic, caused by draindamage or other underlying causes.) The uncontrolable seizures are the biggest problem for kids with Doose. Several kids I know do benifit more from a ketogenic diet (or modified Atkins) than they do/did from anti-epileptic drugs.

Various studies over recent years have shown that the ketogenic diet is extremely effective in controlling seizures in children with MAE, and is now considered one of the most successful treatments for the disorder, even more successful, according to some centres, than the more traditional anti-epileptic drugs. Parents who achieved seizure control through anti-epileptic drugs but with bothersome or inhibitory cognitive side effects have also chosen this form of therapy as an alternative to medication. Some children require a combination of the ketogenic diet as well as medication added, others respond completely to the diet alone.

I guess you allready found this website? (souce quote)
http://www.doosesyndrome.com/index.html


And here http://forum.matthewsfriends.org/ind...ction=register on the Matthews Friends forum you can find other parents who have kids with MAE treated with the ketogenic diet.

www.matthewsfriends.nl offers al lot of information about this diet.

[sandi]

Welcome, I am one of those that has problems with TV especially new HD,
and alot of that depends on what I am actually watching Brilliant nd movement wise- I am better of with Talk TV , Same with Computer better off sticking to forums and read -no graphics or games,
Lighting in Big box stores as well.
Yet I've never triggered a seizure when they to the lights on the eeg.
It 's either not long enough, or my response is delayed-
I have had problems later with it.

[Bernard]

Hi mjandresen, welcome to the forum.

IIRC, it's somewhere around 1% of the epilepsy population that is photosensitive. There appear to be different degrees of photosensitivity. Some find certain triggers (TVs, flourescent lights, light/shadow changes while traveling by car) problematic while others don't. I'm pretty sure that there are members here who have some degree of photosensitivity *and* who did not respond as such during a flashing light test during an EEG.

[mjandresen]

WOW! Thank you all so much for all the great stories and all the warm welcomes! As you all know, its been very devastating and its so hard to go to work and everyone asking how Jack is doing but they can't imagine what its really like to watch your son having 60+ seizures a day. He has tried everything. We are at Childrens Memorial now. He is on Valproic Acid and we just started the Modified Atkins Diet monday!