Mixed Seizure Disorder with Myoclonus?

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My 6y/o son had a tonic-clonic seizure at school about 5 weeks ago. At first I thought he must have hit his head. The idea of Epilepsy really didn't occur to me. But we left the ER with a diagnosis of "first seizure - new onset seizure." Still I wasn't convinced. But of course I took that seriously and we went through the tests. There was definitely no denying the EEG results. There was activity both during sleep and wake, though with sleep there was more generalized discharges. Looking back I have always called him a "restless" sleeper and has "night terrors." So I do believe it's possible it's happening in sleep. He has still only had the one GTC. Thankfully the MRI was fine. While waiting to see the neurologist to get some answers, I googled and googled everything I could about epilepsy.

Yesterday we saw the neurologist and the diagnosis they gave us is "focal and generalized mixed seizure disorder with myoclonus." But no matter how much I google I can't find info on this. I don't know what this means in average human-speak. They also said his chance at having another daytime GTC seizure is over 80%. She prescribed him Keppra, low dose to start. I suppose I assumed he'd be diagnosed with something that fit in one of those boxes, and this apparently doesn't. Does anyone have experience with this, or can shed a little light on what that means for now?

I will say for additional information my son is a sweet and happy boy. He has some speech issues, he is a little bit delayed for his age in that area, otherwise there are no major concerns and he is continuing to progress in his development. He is also a twin.
 
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masterjen

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Hi, and welcome to CWE
The phrase "focal and generalized mixed seizure disorder with myoclonus" in itself may not be the name of a single disease, which is why you are finding nothing from googling. There is focal seizures, generalized seizures, and myoclonus as three separate conditions so it may be that the neurologist is diagnosing your son with two types of epilepsy/seizure and myoclonus. Try breaking the phrasing apart when you google, and try things like "generalized epilepsy with myoclonus" or "focal seizures with myoclonus", generalized epilepsy, focal seizures, for example.
I understand from others here that some children outgrow epilepsy, but you should ask the neurologist about this in the case of your child.
Also, there are many seizure medications out there. Keppra may turn out to be the one that works for your son, but if not note that there are many others that can be tried.
 

Cint

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I have had CP, TC and myocyclonic seizures. My diagnosis is Temporal Lobe Epilepsy with Secondary Generalized seizures. Many people (including kids, unfortunately) have several different types of seizures. Sometimes they may all happen in one day, somedays maybe only CPs will occur. That is why it is so unpredictable.

For more info, check this out:
http://www.epilepsy.com/learn/seizures-youth
 
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I also have been diagnosed with focal epilepsy and generalized epilepsy--a mixed diagnosis. I can pass on what my epileptologist shared with me. Focal epilepsies can include partial seizures and GTCs. Generalized epilepsy disorders, like juvenile myoclonic epilepsy or idiopathic generalized epilepsy, can include GTCs, absence and myoclonic seizures. If your son has both focal seizures and myoclonic seizures, he would have two types of seizure syndromes. I have been told this is somewhat rare but definitely happens. At my most recent appointment last month, my neuro said she thinks the incidence of people having both is underrecognized and underreported since doctors don't expect it and generally don't look for it. I have googled "Concurrent focal and generalized epilepsies" ('epilepsies,' not 'seizures') and found some articles on this. If your son does OK with the side effects, Keppra is a decent medication for it because it treats both focal seizures and myoclonics--the trick is, some meds can help one type and make the other type worse. I was told by my epileptologist that it is important to be seen by a doctor that specializes in epilepsy because treating both can be trickier.
 
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Hi Lindsay. Thanks for that information. Yes, it seemed strange to me that there just isn't more information about it, because in general there is so much information about epilepsy. The neuro we saw yesterday said "basically people like to put things in buckets - this goes here, that goes there..." and this doesn't fit in either. Nor does it seem to have a lot of information about it.

And, we are very new to this! So hopefully more answers will come, but right now they really said nothing about any of them. They didn't say "focal from . . ." or give me a prognosis, or what to expect. I assume because they don't know yet themselves. And based on what I see (which really isn't anything at all, besides perhaps some myoclonic jerks at night??) it's hard to wrap my brain around the fact that he has so much epileptic activity! The only thing I have found about mixed seizures is that they can be harder to treat. So hoping the keppra works. One thing I have really become aware of with an epilepsy diagnosis is that there is that to absorb and then there's the medications. It's just so much to absorb.

Thanks so much for the search-wording! I am going to type that in now.
 
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You might want to start pushing for more direct answers and get your doctor to explain more. As he is working on finding the right med, he will hopefully see improvement in all his seizure types--just because he has multiple types doesn't mean he's got bad chances for control. I know I have improved a lot with the right meds and used to be in complete control. Here's the best link I found on it (sorry I haven't included links much, hopefully this works); it' a larger scale compilation study of people with both:

http://www.seizure-journal.com/article/S1059-1311(05)00208-6/abstract?cc=y=

Click on the 'full article' link at the top. On meds, the one thing to note is that there are several meds that are used to treat focal seizures that in some cases make the generalized epilepsies worse. Some people do fine on them, others don't--these include tegretol, lamictal, and gabapentin. Bottom line in my view is just to have a doctor who really knows epilepsy, and that you feel you can trust. I know for myself, I've seen great improvement with the right med. Good luck, try to not worry too much--there are a lot of good meds out there.
 
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How is the keppra working out? Hope it's doing its job with not too many side effects. My son (9 and also a twin) is on generic Keppra. First couple weeks were awful for him. It's been almost 5 months since he started keppra.

The EEG results didn't point to anyone childhood syndrome? My son's EEG was messy, lots of activity, but neuro could make a good guess.

Good luck!
 

joeyrory

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Neurologists are great but when seizure activity is a bit more chaotic/hard to pinpoint, an epileptologist may be able to narrow it down a bit more as it can can take a lot of expertise and experience to pick up on subtle patterns etc.
 
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Underapileofbooks - My son has definitely had mood swings. One minute he seems more grounded than normal the next he's pretty aggressive. Have they upped the dose for your son in the 5mos. he's been on it, or wanted to add any other meds? Or has it been working. I do have to say I think it's working. He sleeps so soundly.

We are definitely going to be finding a different doctor - I don't know what it is like everywhere, but here it's hard to get in to see a pediatric neurologist. You have to be referred and then the waits are long. So I am hopeful that will happen soon and we find a better fit and some more answers too!
 
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Hi Joey -

We are on the waitlist for our children's hospital and they have an epilepsy center there. The wait is out until October though! But I am crossing my fingers we can get in sooner than that.
 
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My son's meds have not been increased or anything else added. He has gained weight though so I have been wondering about breakthrough seizures just because the dosage would have become inadequate. So far so good though. We go to the neuro again in July so maybe an adjustment then (not sure?).

The one thing we might do and this was brought up at our last visit was the B shots. The meds can deprive them of vitamins and can cause mood issues. Our neuro wanted us to think about doing them.

Are you in Portland, Maine or Portland, OR?
 
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underapileofbooks - I am in Portland Oregon.

Luckily we just got an appointment with another children's hospital here - it's in July too. So I am really looking forward to that. They also have an epilepsy center there. I have a good feeling it will be the right fit for us.

So far he seems to be okay on the meds, I feel like the aggression is a bit less this week, so knock on wood! I also asked about adding B6 and they said to go ahead and do that, starting with 50mgs and increasing to 100mgs, if it doesn't work at the 50. I am looking for a liquid I can have on hand in case we need to do that - I haven't had any luck finding it locally yet.
 
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