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non-electrical seizures with documented multifocal epilepsy
Mon, 04/09/2007 - 13:51my daughter is 21 yo and has had multifocal epilepsy(occipial and temporal lobe) resulting in tonic clonic and complex partial sizures documented with EEG - she recently manifested a change in the symptome of her seizures - our local epileptologist saw these seizures on two occasion and felt that they were frontal lobe seizures - (best described as bicycling motion of legs and arms with hyperventilation and unresponsiveness) He referred us to a long term monitoring center where she spent 9 days with medication decreases and demonstrated 2 of these types of seizures which DID NOT show any electrical changes on the EEG during these episodes but did have EEG abnormalities throughout the duration of our stay - The MD's there stated that these were non- electrical and that she needed counseling to determine the cause - My daughter is slightly LD but wants to work, is busy with activities of all sorts and is devistated by this info and thinks she'd crazy - Has any one else been successful in having a different diagnosis of these types of seizures - help with info in you can - thanks Sue
Comments
Re: My dd (age 9) has nocturnal
Submitted by SueO46 on Tue, 2007-04-17 - 19:54
SueO - thanks for your info - my daughter has these episodes primarily at night but has them also when sleep deprived ( as a 21 year old tends to be with friends etc.)her seizures area also consistently the same in symptoms - bicycling short in duration and minimal post ictal recovery - We see our neurologist next week - he has viewed the DVD from the hospital - we are hoping and praying that he has an answer - it's nice to know that we're not the only ones that have to wait for answers and hear conflicting info from what are supposed to be the BEST Epileptologists in the area - I'll keep you posted - thanks again Sue
Re: non-electrical seizures with documented multifocal epilepsy
Submitted by Michtom on Thu, 2007-04-19 - 07:29
Hi. In some ways your story sounds so similar to mine. May daughter have her fist complex partial 18 months ago when she was 11. At first they seemed to be coming from her right temporal lobe, and at her last eeg it shoed activity now in the TL and now her frontal lobe.
But similar to your daughter, her seizures have changed and, via a diagnosis of a video we made, her nuero thinks she seems to having psychogenic seizures as well. I think in her case she has three kinds of seizures, - TLE and/or FL seizures that are normally complex partial but then go to secondary generalised, then complex partial seizures which should end, but now go to psychogenic because she almost doesn't know now how to react as they start to end, and I think she does have full psychogenic seizures too, sometimes I think out of the sheer stress/fear of having real seizures - it makes it all very hard though.
anyhow she is off to see an adolescent psychologist so we see how that goes in addition to her normal neuro.
This article is something I found really interesting, so it might help (http://pediatrics.aappublications.org/cgi/content/full/110/4/e46)
Good luck
My dd (age 9) has nocturnal
Submitted by ac420ec on Tue, 2007-04-17 - 11:42
My dd (age 9) has nocturnal frontal lobe seizures. The bicycling you described is typical for these kinds of seizures. They are notorius for not showing up on eeg since they are in an area that is hard to detect with the scalp electrodes. She went 2 years misdiagnosed w/ sleep terrors. She also has rapid heartbeat/respiration during hers. When she had her veeg they saw the seizures every 15 minutes while she slept but they only saw changes on the eeg (slowing) after one that lasted over a minute. The briefer ones did not show up on eeg. The things they used to justify their diagnosis were: the repitive, stereotyped actions during the events(every event almost identical, which does not occur in sleep terrors or psuedoseizures)brief duration(typical for frontal lobe seizures),the eeg changes on the longer one. Another feature of frontal lobe seizures is a rapid recovery with little or no post ictal period. My dd only has seizures during sleep and you did not mention if these were at night or during the day? Another feature of my dds are hand/arm automatisms, and wiping nose/eyes/face at the end of every episode. That helped localize the side of her focus as she uses the same hand every time(right hand for a left side focus, although this is not always true)I hope any of this is helpful to you, you can check out my blog for more details. Emily i forgot to add, other than the slowing mentioned her eegs have been normal with the exception of 2 spikes during sleep over a 3 day period