Sleep Myoclonus versus epilepsy?

[chmmr]

I was just curious if anyone has had the debate over whether they or their child have sleep myoclonus versus having epilepsy.
I know true sleep myoclonus you should have a normal EEG.


My daughter has had "episodes" since she was 1 month old (she was a preemie). Originally had a seizure in our GP's office (while sleeping) and was sent for an EEG immediately. EEG was abnormal (spikes at T4) and we were going to start her on meds. Then the childrens hospital said no wait it's sleep myoclonus. Fast forward through much more confusion, twitching during sleep etc, occasional suspiscious episodes while awake for the next 18 months and a trial on meds, followed by week long EEG monitoring that showed nothing and removal of meds and a declaration of sleep myoclonus even with the abnormal EEG.

Now she has a much more dramatic EEG 2 years later after coming off the meds, with "almost continuous spikes" instead of intermittent, and it has moved primarily to T6 now.

I guess i'm curious to see what everyone here thinks or would do if they were in my shoes. Originally our pediatrician wanted to put her on meds right away for fear of brain damage from lack of background activity (too many spikes not allowing enough normal background activity) or from possibly having a huge prolonged seizure, but after talking to the pediatric neurologist the neuro doesn't want her on meds and wants her to "present clinically" (which as i understand could be hard to tell with her being 3 years old and her activity being posterior temporal lobe), or to regress in her development (not a great option in my opinion either since they don't know if they can fix it if she does).

I was supposed to just wait and watch and see our pediatrician every 2 months for a full neuro exam and see how things went but after i mentioned everything to our family doc last week he freaked out and was not happy about waiting and is volunteering to go to our pediatrician and volunteer to write the prescription himself so that our pediatrician doesn't get in trouble with the neurologist (i guess since the neuro is at the only childrens hospital its like a boss employee situation where if they say you can't do it you can't do it).

Would you push for meds? or watch and wait? (and yes i know no one here is a doctor-just looking for opinions from people that have dealt with similar things )

 

[Nakamova]

You probably been through this already, but:
1. Does the myoclonus only occur in while she's drowsy or fully asleep?
2. Does it always stop abruptly when you wake her?
If yes to both questions, those would point more towards benign sleep myoclonus rather than epilepsy.

If the answer to the above is "no" or "not sure", then that, coupled with the abnormal EEGs would tend to rule out benign sleep myoclonus. It seems strange that the neurologist is hesitant to make an epilepsy diagnosis. Can you see another pediatric neurologist for a second or third opinion? That would be ideal. If that's not an option, I say go with your gut -- give the meds a try, and pay close attention to see how they affect her.

 

[chmmr]

A lot does happen while she is fully asleep but she did have an episode that was very tonic clinic like ( but no color change) while in the tub and awake. She also had eyes darting side to side ( think like something out of an alien movie) once with fever and once without.

Maybe she has sleep myoclonus and epilepsy?

Or can you have abnormal EEG's ( worsening even) and still not have epilepsy?

 

[Nakamova]

What happens when you wake her while she's twitching? Does it stop right away?

EEGs are trickier with children. For instance, about 2% of normal school-age children who do not have seizures have epileptic activity show up on an EEG. That said, if your duaghter's had repeated EEGs -- both awake and asleep -- that have shown the abnormal brainwaves associated with epilepsy, then epilepsy is a pretty reasonable diagnosis.

 

[chmmr]

Sometimes she wakes and it stops, yes. Other times i can't wake her (she might stir but never becomes fully conscious and it just continues.

Maybe she does have sleep myoclonus and epilepsy? I can definitely see how some of her stuff fits sleep myoclonus, and while i didn't see it as an infant, i now see her brother has some twitching that is similar to some but not all the things she did as an infant so those i am pretty confident are non epileptic or her twin brother wouldn't be doing them now.

All her EEG's have been sleep deprived EEG's and have started off with her awake, had her fall to sleep and then wake again-is that what you mean Nakamova? Theese are the impressions from all the EEG's she has had to date:

Feb 5:
Impression:
This recording shows one abnormality and that is sharp waves (epileptiform abnormalities) over the right mid temporal with involvement of the ear and paracentral region on the ear electrode paracentral region. This occurs without clinical accompaniment. The remainder of the recording shows normal features for age.

April 13, 2010
Impression:
This recording is abnormal. It continues to show epileptiform discharges in the way of spike-waves over the right paracentral and temporal region. The remainder of the recording during drowsiness and stage II sleep is normal

August 10, 2010 (she was on meds for this one)
Impression:
This recording is abnormal in that it continues to show epileptiform abnormalities over the right temporal and paracentral region, though, this is less prominent than the previous recording.


Feb 7-10, 2011 (childrens hospital off meds)
Impression: During this intensive video/EEG recording, she had sleep myoclonus without any EEG changes. She did not have any staring spells or abnormal eye movements. The EEG background was mildly dysrhythmic and there were occasional sharp waves in the central areas. These interictal findings are non-specific.

May 19, 2011
THis recording is abnormal showing infrequent broad based sharp waves in the right mid temporal, rarely in the paracentral and posterior temporal region

Feb 27, 2013
SHARP WAVES: Broad based sharp waves are seen almost continuously at T6 with some involvement of P4 and C4 with no clinical accompaniment)
This recording continues to be abnormal showing epileptiform discharges in the way of broad based sharp waves frequently at T6 (posterior right temporal), and infrequently at P4 and C4 (which are the posterior parietal and right paracentral locations).

 

[Nakamova]

Seems like a pretty clear confirmation of an epilepsy diagnosis. I agree that it may be worth trying medication at this point before things escalate.

 

[chmmr]

Thanks Nakamova. I kind of feel that way too. I will push on with our docs and see where we get.